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time is getting short

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226 Re: time is getting short on 7/16/2018, 6:52 pm

Good news.  Weight stop declining and i gained two pounds last week.  I am non stop stuffing food down until the nausea hits.....wait a while and start putting small amounts in my mouth.  I ate an entire dinner tonight and ate three dinner rolls which is remarkable.  I will spend Tuesday trying to exercise my legs and arms, and will try to socialize with friends.  I am in pain, but my runs to the bathroom have gone from about 12 a day horrible experience to about 4 a day and almost once a day an almost normal visit to the bathroom.  The problem is my weakness.  I may have gained some weight, but the wasting continues and I must exercise if I hope to survive.  I am weak, but I am walking outside and driving the car.  We are not hopeful, but relieved that the weight loss seems to have temporarily stopped.

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227 Re: time is getting short on 7/16/2018, 9:36 pm

That is great!

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228 Re: time is getting short on 7/17/2018, 12:11 am

Good show, Sea. Let us know how the (hopefully not too strenuous) exercise goes tomorrow.

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229 Re: time is getting short on 7/17/2018, 12:54 pm

The hospice nurse stopped by for her weekly check of my vitals and she said I look much better. I simply do not feel that much better. If it takes this much work to gain back two pounds.....I really doubt I am going to keep forcing food down unless my appetite returns much stronger than it is now. We are visiting friends for dinner and I will see if I can eat. My wife had gotten a Creme Brule set with eight dishes and a torch. We will bring dessert tonight and as there are only four of us, that will give me four extra portions.....on this I am certain.....no problem eating those extras.

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230 Re: time is getting short on 7/17/2018, 1:05 pm

I would love to make you a cheesecake!

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231 Re: time is getting short on 7/17/2018, 4:10 pm

Joanimaroni wrote:I would love to make you a cheesecake!

You can make ME one!! lol!

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232 Re: time is getting short on 7/17/2018, 10:05 pm

LOL.... my favorite White chocolate Amaretto with a chocolate crust. A weeks worth of calories.

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233 Re: time is getting short on 7/18/2018, 12:14 am

Joanimaroni wrote:LOL.... my favorite White chocolate Amaretto with a chocolate crust. A weeks worth of calories.

OMG - sounds like something to LITERALLY die for! Yum and a half!!

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234 Re: time is getting short on 7/18/2018, 7:11 am

sounds like something to LITERALLY die for!

Yikes.....I am dead if I do not eat, and dead if I try a cheesecake.......

Mrs. Seaoat got a frozen cheesecake with cherries, and yes those calories have helped put weight on as I have been stuffing my face. The creme bruele was a disaster at dinner last night. Too many egg yolks and not enough sugar as the recipe was a disaster. Nobody could eat it. We all had a good laugh as my wife is not known for her cooking skills. The presentation with the little bowls and the sugar glaze was perfect, but when you tasted, it was like eating some egg breakfast baked concoction with no sweetness whatsoever.......we could only laugh.

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235 Re: time is getting short on 7/19/2018, 7:53 am

Stick with the cheesecake.

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236 Re: time is getting short on 7/21/2018, 1:29 pm

Had plain cheesecake last night. It was good and I ate it all. What seems to be working very well is my wife has boiled up some hard boiled eggs. I had a ham sandwich for lunch and then two hard boiled eggs. The eggs force me to drink a lot of water to get the eggs down and this is very good because I have not been drinking the water I need. It is like my body shuts down and does not want liquids, but the eggs will have me drink an entire bottle of water and then some.

Up to 206.5 lbs. and I am starting to get a bit encouraged. I still am not walking much, but when I do I am regaining some strength in my legs. We will be going to Tractor Supply to get a smaller work belt. I like the toughness of their belts compared to most clothing stores. I have given up on the suspenders because of the irritation to my spinal bone mets. Walking around with one hand on your pants is no fun.

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237 Re: time is getting short on 7/23/2018, 5:43 pm

Ran the bobcat and lawnmower today. I am exhausted, but I did have the satisfaction of beginning the last flood clean up. Sadly, the bearings are really about ready to lock up and I am going to have to schedule repair sooner than later. Four loads of gravel and scraping the mud off existing roads and packing and leveling the new gravel and our main loop turn around is now repaired which means when slowing down for the loop, nobody will get stuck in mud. This new PRRT is a miracle, but I realized today it is only slowing my decline. Lost a pound on the scale today, as this battle is going to end the same way it was going to end before the treatment. Skelator will try to do four more loads in the morning, and then off to an overnight for the wife and I in the quad cities. Free hotel room, a $100 gift certificate to their steak house, and maybe a little poker if I am able. My pain levels have significantly decreased, but should increase tonight because of the rattling around in the equipment.

I saw a nice documentary by Carl Reiner on aging on HBO. They had all these 90 to 100 year old people and the one thing which was common was they all worked......Carl at ninety something is suppose to be a wiz on the computer and he says he writes every day. I think I am alive today because I expand the envelope beyond physically what terminally ill people do......even if it is a one block walk, it all helps. I saw a hundred year old woman who was competing in the 100 meter dash. I have 34 years of working before I try to run a 100 meters. The problem is cancer has other goals.

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238 Re: time is getting short on 7/26/2018, 3:14 pm

My life felt shorter yesterday. I had steroid blocks in my back and the procedure went well but steroids can elevate the blood sugar levels.

When I got home I took my diabetic medicine and ate three little pieces of watermelon. I took a short nap and woke up thirsty and drank two bottles of water. Then I developed a headache and I took two Tylenol which always clears my head ache within 30 minutes. Couldn't get the headache to stop and my vision got blurry. I felt very uncomfortable so I took my blood sugar and it was 504. I've never had a reading over 200. So I went to the ER and checked in at 7:30 PM. After complete work up including a CT scan for my head and multiple lab studies, 10 units of IV insulin, Toradol IV for the my headache, which did nothing and was followed by IV morphine. The morphine relax me but did not relieve the headache hence the CT scan. Thank God that came back normal and my blood sugar slowly came down after the insulin to 354. I was discharged at 2:30 AM after declining admission I felt comfortable enough to go home and followed up with my family practice doctor this morning. It was scary last night. I am new to this type two diabetes.

I am very fond of my new family practice doctor. His schedule today was only a half a day starting at 1:30 and he was booked but the nurses called him and told him my situation and he came in 45 minutes early to see me. Feeling better now and hope to get some rest.

Dictated not read... eyes still blurry

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239 Re: time is getting short on 7/26/2018, 4:07 pm

Joanimaroni wrote: My life felt shorter yesterday. I had steroid blocks in my back and the procedure went well but steroids can elevate the blood sugar levels.

When I got home I took my diabetic medicine and ate three little pieces of watermelon. I took a short nap and woke up thirsty and drank  two bottles of water. Then I developed a headache and I took two Tylenol which always clears my head ache within 30 minutes. Couldn't get the headache to stop and my vision got blurry.  I felt very uncomfortable so I took my blood sugar and it was 504. I've never had a reading over 200. So I went to the ER and checked in at 7:30 PM. After complete work up including a CT scan for my head and multiple lab studies, 10 units of IV insulin, Toradol IV for the my headache, which did nothing and was followed by IV  morphine. The morphine relax me but did not relieve the headache hence the CT scan. Thank God that came back normal and my blood sugar slowly came down after the insulin to 354.  I was discharged at 2:30 AM after declining admission I felt comfortable enough to go home and followed up with my family practice doctor this morning. It was scary last night.  I am new to this type two diabetes.

I am very fond of my new family practice doctor. His schedule today was only a half a day starting at 1:30 and he was booked but the nurses called him and told him my situation and he came in 45 minutes early to see me. Feeling better now and hope to get some rest.

Dictated not read... eyes still blurry

So sorry joani, scary experience . . . . . at least you had the wherewithall to get to the ER. Hang in there!

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240 Re: time is getting short on 7/26/2018, 4:22 pm

I am happy your training got you to the ER....too many people go to bed ignorant of the danger signs, and do not wake up. Hope you feel better and can identify what is responsible for the rapid change. Diabetes can turn from controlled to a monster very quickly. Keep us updated.

I get my labs and meet with the Oncologist in the morning. They sent me an online questionaire which mostly dealt with depression. One question was could I do two hours of physical labor, and for the first time in ten years my answer was no. I mean I am depressed about some bad poker playing last night and a huge loss on the carnival games, but depressed because I am going to die.....well in my mind I always have the next day to enjoy all the beauty of this world.....the hospice people love my attitude as they have to deal with deeply depressed folks and I cannot be depressed about what I cannot control, but I can be excited and happy with each new day.

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241 Re: time is getting short on 7/26/2018, 5:01 pm

Joanimaroni wrote: My life felt shorter yesterday. I had steroid blocks in my back and the procedure went well but steroids can elevate the blood sugar levels.

When I got home I took my diabetic medicine and ate three little pieces of watermelon. I took a short nap and woke up thirsty and drank  two bottles of water. Then I developed a headache and I took two Tylenol which always clears my head ache within 30 minutes. Couldn't get the headache to stop and my vision got blurry.  I felt very uncomfortable so I took my blood sugar and it was 504. I've never had a reading over 200. So I went to the ER and checked in at 7:30 PM. After complete work up including a CT scan for my head and multiple lab studies, 10 units of IV insulin, Toradol IV for the my headache, which did nothing and was followed by IV  morphine. The morphine relax me but did not relieve the headache hence the CT scan. Thank God that came back normal and my blood sugar slowly came down after the insulin to 354.  I was discharged at 2:30 AM after declining admission I felt comfortable enough to go home and followed up with my family practice doctor this morning. It was scary last night.  I am new to this type two diabetes.

I am very fond of my new family practice doctor. His schedule today was only a half a day starting at 1:30 and he was booked but the nurses called him and told him my situation and he came in 45 minutes early to see me. Feeling better now and hope to get some rest.

Dictated not read... eyes still blurry

Yikes! Sounds like a close one, but you did the smart thing and got help. Glad things are getting stabilized. Take care.

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242 Re: time is getting short on 7/26/2018, 7:51 pm

knothead wrote:
Joanimaroni wrote: My life felt shorter yesterday. I had steroid blocks in my back and the procedure went well but steroids can elevate the blood sugar levels.

When I got home I took my diabetic medicine and ate three little pieces of watermelon. I took a short nap and woke up thirsty and drank  two bottles of water. Then I developed a headache and I took two Tylenol which always clears my head ache within 30 minutes. Couldn't get the headache to stop and my vision got blurry.  I felt very uncomfortable so I took my blood sugar and it was 504. I've never had a reading over 200. So I went to the ER and checked in at 7:30 PM. After complete work up including a CT scan for my head and multiple lab studies, 10 units of IV insulin, Toradol IV for the my headache, which did nothing and was followed by IV  morphine. The morphine relax me but did not relieve the headache hence the CT scan. Thank God that came back normal and my blood sugar slowly came down after the insulin to 354.  I was discharged at 2:30 AM after declining admission I felt comfortable enough to go home and followed up with my family practice doctor this morning. It was scary last night.  I am new to this type two diabetes.

I am very fond of my new family practice doctor. His schedule today was only a half a day starting at 1:30 and he was booked but the nurses called him and told him my situation and he came in 45 minutes early to see me. Feeling better now and hope to get some rest.

Dictated not read... eyes still blurry

So sorry joani, scary experience . . . . . at least you had the wherewithall to get to the ER.  Hang in there!

Also had the wherewithal to decline a lumbar puncture ( don't need to risk a leak). I declined admission.

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243 Re: time is getting short on 7/26/2018, 7:54 pm

BS 225 steroids are still on board.

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244 Re: time is getting short on 7/26/2018, 9:33 pm

How long do you need them?

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245 Re: time is getting short on 7/26/2018, 10:42 pm

Steroids were injected through the epidural injections. Outpatient procedure.

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246 Re: time is getting short on 7/26/2018, 11:03 pm

When do you start shaving?

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247 Re: time is getting short on 7/27/2018, 12:08 am

Joani, just ignore that dummy Seaoat.  Ha.  

Seriously, I'm sorry you had to go through such a frightening experience, and hope you'll never have that happen again.   It's such a traumatic experience, having the health rug pulled from beneath one's feet, and I empathize.

Very good to know you're watching out for yourself.   Smart cookie.



Last edited by RealLindaL on 7/27/2018, 4:34 pm; edited 1 time in total

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248 Re: time is getting short on 7/27/2018, 12:10 am

2seaoat wrote: I cannot be depressed about what I cannot control, but I can be excited and happy with each new day.

Words to remember.

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249 Re: time is getting short on 7/27/2018, 2:09 pm

2seaoat wrote:When do you start shaving?

I upset my Olympic adventures are over.

Thank you RL. I appreciate it.

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250 Re: time is getting short on 7/28/2018, 11:51 am

I now hold the dubious distinction of having the highest recorded hormone levels for endocrine cancer at Northwestern. I am the dead man walking, with a sense of humor. I had my little bit stuffy oncologist actually let out a laugh as I Proudly told him that I am going to have to let my surgeon know who told me at 40k I had set the record for interventional radiology that is nothing.....I doubled it to 80K

The good news that ALL patients at Northwestern since the FDA approval of the European treatment are doing MUCH MUCH better. This will not cure their cancer, but it will give them more quality time. I have never seen him so happy announcing the results for his patients, and understand after sharing this battle with him for almost seven years you begin to get personal ties with your patients and how devastating it is to see so many die, but he was like a kid who had his first beer......giddy almost. He did explain my situation remains grim, but "they" all have hope for me in this treatment, the big problem is that there are eight weeks between radiation treatment so instead of getting my 60 mg of sandostatin once a month, I am on a two month cycle which is about 60 days without a shot where the 72 day gap almost killed me six weeks ago.......so they are going to prescribe daily low dose sando shots which I will have to inject myself if things start to get bad.......I am just stuffing myself in anticipation later this month having the wasting and death cycle, and hope to avoid the injections because the Sando interferes with the adhesion to the cancer tumor by the special European amino acids designed to adhere to the same cells that the sando attaches. So for some temporary comfort and relief, I may be compromising the adhesion of the vehicle which can eliminate the bone mets.

Going to a large party for a fifty year anniversary party tonight, and I am encouraged that my energy levels have been high, and I am going to stuff myself on hopefully tasty food. These cancer battles never end well, and sometimes the hardest part is those plateaus which fool you into a sense of security.......there is no security with cancer.

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