Older Folks and Vaping Back Porch - Part Seven

[Flowersoul]

For Earth Day, NASA is offering a slice of The Earth for Free Adoption, 64,000 pieces are available .. of course, you don't actually get to own your Piece ..

I claimed ::

https://climate.nasa.gov/adopt-the-planet/#/explore/52625

You can get one of your own at ::

https://climate.nasa.gov/adopt-the-planet/#/

I was able to learn more about my adopted hunk a hunk a Earth on NASA’s Worldview website, where I could view air quality, vegetation, and more on the adopted slice of land from NASA’s Earth Observing System Data and Information System.

Ultra Hip and absolutely Free ..

Well, I'm located at 3.12° S, 104.64° E. Now, wherever that puts me is beyond my scope, but not out of the ordinary cause I'm still trying to find out where I am or what I want to be when I grow up.

As Requested:

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And while I am sharing pics - here is one of the cheerful couple that we visited...

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And since I showed the Sunrise over the ocean I might as well show the Sunset over the river...

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Beautiful!

Sunrise was nice this morning, and came with a 'twist'.

Barely peeking over the horizon, from 393' directly above my house, facing due East:

View attachment 648321

Turn around 180 deg. facing west, and the moon was still up too!

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That's the little community <1/2 mile from my house. A railroad crossing, a little country store, two churches, and a post office.

That is breathtakingly beautiful.

Good morning, everyone... I know that it's been a very long time since I've made it by here, and I'm so far behind that I fear it would be impossible for me to catch up at this point... but it's been a long weekend and we've recently gotten some rather disheartening news on the medical front. I know that quite a few of you have been following our journey, and I wanted to make time to come by and give y'all a bit of an update. My Darling Bride had CT scan on Saturday, then brain MRI, full body bone scan, echocardiogram, and an EKG on Monday as a screening for a clinical trial that was supposed to start today. Yesterday was an appointment to get the results of all the scans and talk about the trial... we got bad news.

The scans showed significant tumor growth and spread. The tumors in her right lung have continued to grow, as well as the few tumors in her chest wall. But now they have found that she also has tumors in the liver, the right humerus,bones of the pelvis, both femurs, right fibula, sternum, skull, and spine. Also found a small 1cm tumor in the left cerebellum. That small little tumor in her brain disqualifies her for clinical trials. We have an appointment next Monday with radiation oncology to discuss the findings in the brain, and possible treatment options. If we can resolve the brain tumor, then it may be possible to resume clinical trials. Either way, it was very hard news to take. Her spirits are still up, and she is still fighting with everything that she has. I will continue to do my very best to keep her happy and to support and love her in every way that I possibly can.

Am so sorry to read that news! What a spirited couple you are!!!

That's GREAT, Pat!! Very happy to hear that you're able to cut down on the pain meds a bit. I have no experience with Xanax... I think my Bride was on it for a very short period of time. She didn't like the way she felt on it, so she is on Ativan now. She seems to like that one a bit better. For pain meds, they've taken her off of the Fentanyl patches and switched her to methadone for long-term/long-acting pain medication with dilaudid for break-through pain management. She's also using quite a few lidoderm patches for topical treatment.

Ativan is a true life saver for me. When I have an 'event' starting to manifest itself, I take 1 mg of Ativan, and it stops it in its tracks.

 

[Kaezziel]

Am so sorry to read that news! What a spirited couple you are!!!

Thank you! It certainly wasn't the news that we were hoping for. I think, on some level, neither of us were surprised by it, but we had no idea that they would find something that would prevent her from taking part in the planned trial. We're hoping that the appointment next Monday will tell us that they can do something for the brain tumor and she'll be able to resume treatment options. There is still hope!

Ativan is a true life saver for me. When I have an 'event' starting to manifest itself, I take 1 mg of Ativan, and it stops it in its tracks.

It's done wonders for her, also. Particularly when the pain gets to really bothering her. When that happens, she gets short of breath and then she starts to panic. She'll take the Ativan and that'll calm her down enough to be able to catch her breath again. It's amazing to see how closely everything is linked together in the body like that... and that if you can treat one aspect, it helps with several others.

 

[Kenna]

No I check on it but have been feeling pretty weird lately. Haven't even started cutting the patches down yet. Trying to get off the Xanax and cutting down on the breakthrough pain meds. Man that Xanas is a beech. I tried to cut it completely out Monday. Got down from 1.5mg-2mg to .5mg and when I went to bed my brain was working at 1000mph after 2 hours of laying there I took some. I had no idea this stuff was so addicting. I have a doc appt today. I'm down to .5mg and 6-10mg pain pills from 1.5mg and 8-9 pain pills. Plus trying to get used to my new glasses from the VA. I had no idea about the xanax been on them for 5 years.

No wonder you feel weird! That is a lot of chemical changes going on in your body at once. But feeling different is expected isn't it? They've been altering your physical reality for so long that it started to feel normal. But it's not. Are you experiencing much pain?

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[Kenna]

How about "I love to go swimmin with bow legged women and swimm between their legs" Don't feel bad mine seems to be in a very remote piece of the Pacific. And from what data I can get not very hospitable. Guess I could get a a ball and put a face on it if I had both items pen and ball.

[emoji23] [emoji23] [emoji23]

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[Kenna]

He called me Sunday and I asked him if I could maintain the weight I'm at which is a 19.5 BMI if I could hold off on the surgery. He said that would be fine. He reiterated that the surgery was a last resort. If I can't maintain the weight then it may not be an option. I told him I was going to try to get off the fentanyl. He said if I shoot for a date like 6 months in the future and stay at the weight I am I might not need to get it. I was feeling better from this different protein. He said the beauty of this stuff is 99% of it is absorbed compared to the other stuff, which for someone with a normal digetive system works fine. He said if he has to do it he would only increase my common channel which is the part where the digestion and absoption takes place from about 75cm to 125cm. Otherwise I could gain too much. I will find out today how my weight is doing. I have noticed that with this proteing my appetite is much better and I'm eating about double what I was. So we'll see today. I'm hoping I'm still at 137.6.

That is great news! I'm so glad you are feeling better. Now. Do. Not. Stop!

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[Kenna]

Since everyone is showing off their small piece of the earth that they have - I thought I would show you ours...

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But, I didn't acquire it through a website and I have sipped a many a coconut while resting on its shores...

Awesome!

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[Kenna]

Thank you! It certainly wasn't the news that we were hoping for. I think, on some level, neither of us were surprised by it, but we had no idea that they would find something that would prevent her from taking part in the planned trial. We're hoping that the appointment next Monday will tell us that they can do something for the brain tumor and she'll be able to resume treatment options. There is still hope!



It's done wonders for her, also. Particularly when the pain gets to really bothering her. When that happens, she gets short of breath and then she starts to panic. She'll take the Ativan and that'll calm her down enough to be able to catch her breath again. It's amazing to see how closely everything is linked together in the body like that... and that if you can treat one aspect, it helps with several others.

Shortness of breathe goes hand in hand with a panic attack. No fun.

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[Kaezziel]

Shortness of breathe goes hand in hand with a panic attack. No fun.

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Well, she's on 3L/hour of oxygen, too. She shouldn't be getting short of breath... but the pain sometimes pushes her past her limits.

 

[Iffy]

One of these days, I'll get my act together...

Our dear Kaez,

There is absolutely nothing wrong with your 'act'! You just keep doing what you're doing. And we'll try our best here to do our 'part'...

We all wish your news was more encouraging. But never feel guilty nor apologize for your occasional absence!

With continued love, hope, admiration and prayers, we wish you and your bride our best!

 

[Kaezziel]

Our dear Kaez,

There is absolutely nothing wrong with your 'act'! You just keep doing what you're doing. And we'll try our best here to do our 'part'...

We all wish your news was more encouraging. But never feel guilty nor apologize for your occasional absence!

With continued love, hope, admiration and prayers, we wish you and your bride our best!

Oh, dearest Iffy,

I know that you understand well the role of a caretaker, and if you aren't aware of the level of respect, love, and admiration that I have for you... well, let's just say that I don't believe I would ever be able to adequately express those feelings.

I think of you and your bride often, and definitely include the both of you in my daily prayers. I will try to check in a bit more often, though... I've missed all of you, and I just feel terrible that I've lost touch with what is going on in your lives.

Much love and many prayers, sir. Always.

 

[Kenna]

Well, she's on 3L/hour of oxygen, too. She shouldn't be getting short of breath... but the pain sometimes pushes her past her limits.

The panic attack is causing the shortness of breath. I get it when an attack is starting. It's my first clue. But they hit so fast & so hard I don't have time to do anything except try to focus on slow, deep breaths. Counting numbers in a random order also helps refocus, as long as I can stop whatever was causing the attack.

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[Kaezziel]

The panic attack is causing the shortness of breath. I get it when an attack is starting. It's my first clue. But they hit so fast & so hard I don't have time to do anything except try to focus on slow, deep breaths. Counting numbers in a random order also helps refocus, as long as I can stop whatever was causing the attack.

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Yeah, that's exactly right. I keep the Ativan in a bottle that is easier to open and keep it close to her so that it's there when she needs it. Those panic attacks can be brutal sometimes!

 

[clnire]

{{{{{KAEZ and DB}}}}}

 

[Kaezziel]

{{{{{KAEZ and DB}}}}}

{{{{{{{{{{Cathy}}}}}}}}}}
Thank you, Hun! I never turn down hugs!

 

[2legsshrt]

They've been altering your physical reality for so long that it started to feel normal. But it's not. Are you experiencing much pain?

Not really I haven't cut the meds much yet. Am going to get a Rx for 12.5mcg and 50mcg today. Thats a cut of 30 MED which is why I cut the pills so if I need to take more I can. And that is true about the reality so we'll see how it goes. Hopefully as well as Ginny, she hasn't really noticed it well maybe a little but the put her on Methatrexate trying to wean her off Prednisone plus went to 62.5mcg patches 5 days ago so she is ahead of me. I have to go the other route my insurance would never cover those.

 

[2legsshrt]

Well, she's on 3L/hour of oxygen, too. She shouldn't be getting short of breath... but the pain sometimes pushes her past her limits.

I'm so sorry she and you have to go through this. It's got to be miserable. Will be praying.

 

[Kaezziel]

I'm so sorry she and you have to go through this. It's got to be miserable. Will be praying.

For me, it's just hard to watch and not really be able to do anything to help her. For her, though... yeah. It hurts her to lay still and it hurts her to move. We see the pain management doc again on Monday, so I'm hoping that they can figure something out to make her more comfortable. Thank you for the prayers, Pat. You and Ginny are always in mine, too!

 

[MikeE3]

Ah ... it feels so good to be back home again.

 

[Kenna]

Not really I haven't cut the meds much yet. Am going to get a Rx for 12.5mcg and 50mcg today. Thats a cut of 30 MED which is why I cut the pills so if I need to take more I can. And that is true about the reality so we'll see how it goes. Hopefully as well as Ginny, she hasn't really noticed it well maybe a little but the put her on Methatrexate trying to wean her off Prednisone plus went to 62.5mcg patches 5 days ago so she is ahead of me. I have to go the other route my insurance would never cover those.

I'm pretty shocked that she wasn't on Methotrexate from her point of diagnosis. It's been the #1 go to for RA since the 70's. It's a DMARD. Disease Modifying Anti Rhuematic Drug. It was developed to treat some cancers but they found it works miracles for RA. It basicly fools your immune system into thinking you have cancer so it isn't so attacking your joints. I take 6 pills all at once, once a week. Highest fose is 8 pills. I was on that dose for many years. Now, with the Rituxan I'm down to 6 a week. I was able to get ogf the predinose with the biologics. I was on that for way too long.

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[Kaezziel]

I'm pretty shocked that she wasn't on Methotrexate from her point of diagnosis. It's been the #1 go to for RA since the 70's. It's a DMARD. Disease Modifying Anti Rhuematic Drug. It was developed to treat some cancers but they found it works miracles for RA. It basicly fools your immune system into thinking you have cancer so it isn't so attacking your joints. I take 6 pills all at once, once a week. Highest fose is 8 pills. I was on that dose for many years. Now, with the Rituxan I'm down to 6 a week. I was able to get ogf the predinose with the biologics. I was on that for way too long.

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So glad that you're finding some relief, Hun! Are you still taking the infusions?