time is getting short

My wife has gotten very good at grits with easy over eggs which I have been eating since I was a kid. The grits give me some filler and the eggs protein. I have to skip this breakfast and rotate it for fear of being revolted by the same in a couple days. I walked about three hundred yards onto the islands as we are having to take down two tent sites because of the rising river and chance we could lose them in a flood. All batteries and inverters collected, and I left the solar panel and controller out there because it is elevated and nailed to trees. We are thinking about going to the quad cities to stay at a hotel and get our free steak dinners and play some poker. I last about an hour at the table, but we are considering a wheel chair now. I just get so tired walking from the room to the casino floor and restaurants. This has been hard on Mrs. Seaoat and my daughter as my shoulders look like I was in a concentration camp....skin, bone and no meat. I keep wondering how much more wasting.

2seaoat wrote:My wife has gotten very good at grits with easy over eggs which I have been eating since I was a kid.  ...  

Used to love that myself, as well, 'Oatie' with the eggs over easy and bacon crumbled in.  Some years ago I discovered putting a good dose of Tapatio hot sauce over it makes it really good! .. mmmmm!   Had to mostly quit the grits though ... empty carbs.  Not on my current diet except every great once in a while.  I've come to realize I need to stay as fit and healthy as I can at this point in my life.

Casinos .. they bore me.   I never really got into gambling, but for the occasional kitchen table poker for pennies game with family and friends.  Each to his own.

Keep your chin up though and enjoy your last months/weeks/days as best you can.  It comes to us all some day.  

My wife is Stage 4 with bone mets only at this time so far as they can tell and has been NED for almost two years now.     (Another Pet scan tommorow, actually ... twice a year.  Fingers crossed ... always!) The meds are pretty tough on her though as are the physical imitations imposed by her laminectomy and titanium rods in her back.   She's not even 60 yet, so quality of life is very important to us nowadays.  The docs say the prognosis is good for 5, 10, 15 .. who knows how many more years what with all the new treatments that might be developed in that time, so that gives us further hope.  But despite the stats and what the doctors tell us, we are also acutely aware things could take a turn at any time as at least one of her oncologists has cautioned us.  Cancer can be funny like that.  

Much thanks to her Japanese-Brazilian spinal surgeon at MD Anderson.   Nine+ hours on the table.  Really messy, nasty tumors so they said afterwards, as tumors go.   Man, what a great guy though .. on a personality level I mean, not just his surgical skills. Just truly the nicest fellow you'd ever want to meet.  Really makes ya question our society and who we choose to celebrate as heros or whatever ... pop stars, football players, etc.    She'd have surely been in a wheelchair now had we not found that guy as quickly as we did.  The spinal compression was on the verge of severing her spinal cord when it was finally found out.  (Damn incompetent doctors with Pensacola Baptist Health Care .. I have nothing good to say about Baptist here.)  We found out on a Tuesday, got the runaround about surgery (3 weeks Baptist said) ... so I self-referred her to MD Anderson via the internet on Thursday afternoon complete with a copy of her MRI and other records, Dr Tatsui's NP called us on Friday afternoon and said "can you be here Monday?"  Apparently they were quite aghast at what they saw on the MRI.  I bolted a small sofa into the back of our minivan and headed straight over there.  We must have looked like the redneck ambulance. We saw Dr Tatsui first thing Monday morning, and they did the surgery on Tuesday. It was that critical.   And of course a long course of radiation following the surgical recovery.  Needless to say, I've spent more time in Houston since than I ever imagined in my life I would.

I hate hospitals, though.  Slept in her room in MD Anderson for three weeks straight.   They let me.  Hate being in hospitals, though... always have.  Just something about it .. the lighting, the smell, I don't know ... just the whole environment.  I can only hope I go with a big massive heart attack, stroke, or some major accident.  But we don't necessarily get to choose, do we?

I grew up eating grits with a crispy fried egg and a runny yolk and crumbled bacon. My grandsons always request grits, eggs and bacon when here for breakfast or lunch.

I can only wish you strength to carry on... both of you.

I am so sorry Emarald for your wife's cancer challenges. I am very happy you were able to get out of regional care and find a top ten national care giver. I cannot enough about the advances which Anderson has made in the cancer fight. To this day I am sad that I failed to get Bob to go to Houston. People think I am downgrading Pensacola, but I made the same mistake with my regional hospital, and I have lost years of life because of medical ignorance and lack of experience that major cancer centers like Northwestern and Anderson provide. Sometimes you are simply stuck in regional. I am watching a friend die from auto immune disease attacking his liver and kidneys and have begged him repeatedly to go to Northwestern and get a second opinion, but his wife works in the lab of the regional hospital and has convinced him his doctors are really good. My pulmonary doc took out my rare lung tumor. He had only seen one other in 35 years. My pulmonary doc at Northwestern does a 150 operations a year on Endocrine cancer tumors......it is just probabilities and staying in a regional hospital system when Anderson and Moffitt are available is just not a good decision by the probabilities.......yes people in Pensacola may survive, and People at Anderson may die, but the year end stats tell you that major cancer centers save people's lives and NEVER be fooled by the false argument of good doctors being local......they are good doctors, but they do not have the volume of the cancer centers which are learning and teaching centers.

I may be dead in a couple weeks after this PRRT, but I am going with the best odds, and to the extent I have been blessed with choices, I will forever be thankful.

On a personal note, as a caretaker for your wife.....god makes very special people who stand by their spouse in Illness, and everyday I feel blessed that My wife is there for me, and I see her pain and I better understand your turn to the negative recently in some of your posts......you just let it go and do not worry about a thing.....I get it.

2seaoat wrote: I better understand your turn to the negative recently in some of your posts.....

Negative?   I don't think I'm negative.  Just like to always try to see things with clear eyes ... if some folks want to interpret that as "negative", well, I have no help for them on that count.  [i](And has nothing to with being a so-called caretaker  - don't really see myself in that particular box anyway, she takes care of me as much as I take care of her, but thanks for the sentiment)

I'm just not shy about fighting for my positions/opinions and always try to do it with logic, facts, reason, critical thinking, etc... and not political spin.  And I won't hesitate to call people out on their bs.  Though, I can admit when I'm wrong .... and that's part of the whole point of wasting my time in places like this.  To test my beliefs, opinions, logic, etc.   (of course, I'm never wrong, but there's always hope !!  Even for me.   )

Good luck to ya, 'Oatie'  (I'm not religious so that's about all I can say)

EmeraldGhost wrote:

My wife is Stage 4 with bone mets only at this time so far as they can tell and has been NED for almost two years now.     (Another Pet scan tommorow, actually ... twice a year.  Fingers crossed ... always!)

Yikes! Sorry to hear this. I'll join you in finger-crossing and wish your wife the best.

I hate hospitals, though.  Slept in her room in MD Anderson for three weeks straight.   They let me.  Hate being in hospitals, though... always have.  Just something about it .. the lighting, the smell, I don't know ... just the whole environment.  I can only hope I go with a big massive heart attack, stroke, or some major accident.  But we don't necessarily get to choose, do we?

I can relate. A few years before my dad died he broke a hip and it landed him in the hospital for months (partially 'cuz being in there wrecked his stomach and a bunch of other things -- hospitals tend to fix one problem and give you three more). I ended up working all day and then going directly from work to the hospital and staying there 'til around bedtime so my mom (who stayed in the hospital with him) could go home, eat, get a shower, and a few hours to herself. I got a lot of reading done, and I always like that, but other than that, hospitals are top of the list of the most un-fun places to be. That smell stayed in my clothes. I'd even dream about it.

Cancer keeps life real. There is no morality of good or bad.....it just consumes humans, and a thousand years ago a bacteria on a rat killed millions, and a thousand years from now it will be something else......life is wonderful, but it is a short journey.

2seaoat wrote:Cancer keeps life real.  There is no morality of good or bad.....it just consumes humans, and a thousand years ago a bacteria on a rat killed millions, and a thousand years from now it will be something else......life is wonderful, but it is a short journey.

"Think not disdainfully of death, but look on it with favor; for even death is one of the things that Nature wills." ---- Marcus Aurelius

Aurelius had a lot of insightful things to say about "death", actually. But I can only guess when standing right on that threshold, as you are 'Oatie', platitudes  about it begin to matter a whole lot less?     (what can I say, I'm a platitudes kind of guy ...   so please forgive if it seems trite to you)

I hope I have many years left myself ... not that there's anything I'm keen to do in this world yet, rather most interested to see how my beautiful daughter's life unfolds.  .. but I am at the same time under no illusions and acutely aware of what the poet Donne had to say about that bell tolling.

I had a wonderful evening as the grandsons spent the night. We are going to have to make a rule that no ipads when they visit. It is like a pacifier and they pick them up and zone out. Mrs. Seaoat separated the Ipads and the youngest had a fit for an hour not having his I Pad, and then he actually played games with us and had conversation. My daughter has been good for two years not sending the ipads out with the granddaughter's and we are going to ask my son and his wife to separate them from the IPADs at home.

They enjoyed looking at their father and aunt as kids in our photo albums. They also wanted to see "scary" which was this full gorilla suit with this horrible realistic mask. I had adults and kids jump off our porch when I would hand out Halloween candy in the outfit. I had to stop because it was the parents who were going to get hurt jumping off the porch. Kids like to see their folks as kids.

My brother flew in and so did his daughter and granddaughter. All my kids are here as well as the grandchildren. Four parties in three days plus a baseball tournament. Not sure my brother is use to lunch with 17 people....from 4 mos. up. Seafood Gumbo supper and steak tacos for the Negative Gumbo team... served 25 family members.

Pool, fishing, and boating party today. Plus a softball and baseball tournament for 2 of the kids.

Over-whelming my brother in a good way.

2seaoat wrote:I had a wonderful evening as the grandsons spent the night.  We are going to have to make a rule that no ipads when they visit.  It is like a pacifier and they pick them up and zone out.  Mrs. Seaoat separated the Ipads and the youngest had a fit for an hour not having his I Pad, and then he actually played games with us and had conversation.  My daughter has been good for two years not sending the ipads out with the granddaughter's and we are going to ask my son and his wife to separate them from the IPADs at home.

They enjoyed looking at their father and aunt as kids in our photo albums.  They also wanted to see "scary" which was this full gorilla suit with this horrible realistic mask.  I had adults and kids jump off our porch when I would hand out Halloween candy in the outfit.  I had to stop because it was the parents who were going to get hurt jumping off the porch.  Kids like to see their folks as kids.

Thanks for the heartwarming and amusing account, Sea, and congrats on making some progress unhooking the kids from their iPads. Am in a little pain today but reading this definitely helped (Joani's post, too). Glad for both that you have such fine, large families for support, love and fun.

Drove somewhere for the first time in two weeks. It is going to be very difficult driving three hours to Chicago in my current condition. I am alive.

2seaoat wrote:Drove somewhere for the first time in two weeks.  It is going to be very difficult driving three hours to Chicago in my current condition.  I am alive.

You don't have to drive yourself, do you??

I am afraid driving probably is not in my near future. Have the granddaughters out, but I am suffering a great deal. Had a nice visit with the daughter and hope to feel better tonight to spend some time with the girls. This is really getting ugly and I am thankful that there is only three more days to PRRT, but I am pretty much in touch with reality.....my expectations are more pain and slow demise. I hope I can make a fiftieth wedding party for friends in July. All my golf buddies for the last twenty years will be there. I barely got home last night from a restaurant we went to....I left before the check and sat in the car because of how uncomfortable I was sitting in the restaurant and having people stare at me as I was unable to keep my head up. My wife knew the waitress and they converse on facebook, and she immediately knew things had gotten very bad. My wife is a saint, but I told her I cannot go out again, and that the three hour drive to Chicago is going to be difficult. We will leave at about four am. I am tired but ready for the next challenge.

Best wishes. You've done an amazing job of perseverance. I bet you're going to pull though this too.

Wishing you all the best from here, too, Sea. Hope you'll be able to give us an update soon. Safe travels....

Met with the Hospice nurse today filling out paperwork and she did my vitals, got my medication lists, and the best part I may get twice a week a cancer massage which is a much gentler massage than traditional. I find that my wife can massage my feet and legs and reduce the pain for about an hour and it relaxes me to where I can sleep. Very much looking forward to two one hour massages a week. It works wonders for me. I will meet with the PA in about ten days as I will be hot through the weekend with my body filled with molecular level radiation......I have had pinpoint radiation but nothing like this European treatment which attack all my cancer in my body. Hospice asks a great many questions about the psychology of dying and depression, and if you hold any strong religious beliefs.......I let her know I have no fear of death.....none, but I am not particularly fond of the pain I am experiencing and they will work on getting some pain cocktails together to minimize the constipation with opiates. Before she left she said she could not believe how upbeat I am.....my granddaughters came in and all she could say was they were beautiful and I simply said when you were given six percent chance to be here and you get to share life with these beautiful gifts.....how could you be depressed or fearful of the future........all is really good. My wife spoke with her outside and she said she was amazed and could not wait to visit again....I told her to go home and read matthew six.....you will get it.

Your nurse will really learn from you.

It is funny you said that she will learn. This is what my wife said she was talking about outside. You see her phone rang, and she had the tune of the Animals the house of the rising sun. She had never heard of the Animals. She had never heard of Eric Burdon, and she sat like a child writing down what I was saying. She wrote down medical terms and my conditions, and then told my wife that your husband is extremely intelligent and he has shown no decline in his cognitive. I simply laughed at what my wife said. You see my cognitive skills have greatly been reduced and I am having trouble with time. I think more time has passed than actually the clock discloses.....yet she thought I was some type of genius......too funny. My poker buddies would laugh their asz off, but in the end, we do have a lifetime of experience and reading.....it has served me well as I helped people over a thirty seven year career........but now having enough sense to see the cognitive decline I am officially now retired. People have a hard time accepting that I am no longer available. My daughter is doing counseling with my impending death, and the nurse was very happy and worried about Mrs. Seaoat........I explained that every male for thirty miles has heard about the soon to be widow who can fix the belts on a john deere commercial mower and owns islands where they can fish.....all the men drinking coffee light up when she stops in as our neighbor is telling stories about what she has done on our projects.....no life is good, and to teach truth and integrity.....I have a lifetime of example which goes beyond talking about solving problems.....I solved problems and helped people and in the end I guarantee you I could not spend the money even if I wanted to.......so totally unimportant at the end, and thankfully cancer has given me the wisdom to appreciate that good deeds do matter and money is this stupid scorecard which has little or nothing to do with a life well lived.

You are one of a kind.

Joanimaroni wrote:You are one of a kind.

I'll second that emotion.

This thread needs to be safeguarded for the duration.

The procedure went well. I tolerated it. No throwing up which apparently is pretty standard. Up at 3, leave at 4am, arrive at 6:30, labs at 7, procedure starts at 9, procedure ends at 3:30pm, eat at a hospital greek restaurant, then four hour drive home caught in rush hour traffic and construction.

The Nuclear Medicine were pumped up with what they are seeing with the PRRT. They are seeing people gain weight, tumor sizes cut in half, appetite recovery, and to the last one who has gone for their second treatment with shocking improvements. My medicine arrived from Italy just this morning. The Europeans are so far ahead of us in so many areas that our hubris and arrogance, and bureaucratic delays in FDA have watched thousands die because of non approval until this past January. They told me story after story of people who are much worse. One woman was unable to eat for three months and now is eating and enjoying her food. All the excitement in their voices and faces is because usually these people see people suffer and decline in treatment.

I simply do not understand why I am still here, and why with each new discovery in this disease, I have had a world class teaching University Hospital rated top ten in most polls, and yea a four hour drive when you are very ill is no fun, but if I had stayed at my regional hospital I would be dead. When you watch your body waste away, it is a very unpleasant experience which makes you appreciate how powerful the body is when healthy. The next two weeks should be tiring as at the molecular level the battle begins. Got my regular sando shots after the procedure and my bone met shot. All good.

Glad to hear... hoping for the best.

Great report, Sea! Hang in there as the internal work begins. Fingers and toes crossed tighter than ever before. We're with you all the way!!

I am thrilled!