Where are you all?

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Post  Michi on Sun Mar 29, 2020 6:43 pm

Sorry Celia, I should check in more often and thank you for keeping this site running.

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Post  Lesley Niyori on Sun Mar 29, 2020 7:14 pm

2 weeks now inside. I went out once to pay a bill.

I have learned that it doesn't mean much to me if I am not alone.
D'arcy came to visit me on the 26th. Made sure she was aware she might be stuck here (was a challenge to get her a ride here, no real idea how to get her back home eh).

The town appears like a Sunday morning, but all of the time.
They have moved to make it unallowed to gather in groups of more than 5 here in Ontario.
I am sure we have plenty of idiots who will defy that, you know, for dumb reasons.

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Post  Celia Eriksson on Sun Mar 29, 2020 10:22 pm

Hi Lesley,

It's the same here, but no more than 3 adults. You can exercise once a day, you can shop only when essential, ( a bit vague?) and you can go to work if essential.... tick...

I simply have to shop tomorrow, I need milk, eggs and bread. I have a large freezer and that could actually keep me, a small eater, going for well over a month. I like my wineypoo so I'll get some more, maybe the boxed wine that keeps for six weeks when opened. I don't have the horrid little bugger yet, but I have to be prepared. I'll freeze the loaf and some milk too....

Keep well everyone, it's probably gonna be a long haul, but my hope is the horrid virus runs outta steam... it made itself powerful, let's hope it only has so much push, i.e. hopefully once a lower than usual percentage are affected it cannot get a grip on the rest.

Celia xx

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Post  tiffany_elizabeth on Tue Mar 31, 2020 12:13 am

Celia Eriksson wrote:Hi Lesley,

It's the same here, but no more than 3 adults. You can exercise once a day, you can shop only when essential, ( a bit vague?) and you can go to work if essential.... tick...

I simply have to shop tomorrow, I need milk, eggs and bread. I have a large freezer and that could actually keep me, a small eater, going for well over a month. I like my wineypoo so I'll get some more, maybe the boxed wine that keeps for six weeks when opened. I don't have the horrid little bugger yet, but I have to be prepared. I'll freeze the loaf and some milk too....

Keep well everyone, it's probably gonna be a long haul, but my hope is the horrid virus runs outta steam... it made itself powerful, let's hope it only has so much push, i.e. hopefully once a lower than usual percentage are affected it cannot get a grip on the rest.

Celia xx

Is it strange that I wish I were in your position? I'm considered essential. I was hoping a state trooper would pull me over on the way to work and tell me to go home, but I was given a letter to show them. First day off in six days, which is nothing compared to what some of my coworkers have been pulling, and I had to dodge a call to go in tonight. This thing is bringing out the worst in people, and it's causing people to bring out the worst in me so I need today to reset before I end up strangling a customer.

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Post  Celia Eriksson on Tue Mar 31, 2020 1:20 am

And I am with you there girl.... I often think the same thing. I have a pass though. If I kinda forgot both that and the back up letter too, I would probably still not be pulled over here I reckon.

Coz I have not seen a single Surrey police stop station yet. It's happening bigtime in other counties, but for some reason not here, but this is the mildest county in the land, I guess they don't reckon we would break rules...… and to be honest, it's true, nobody has moved much here unless necessary, at least where I live.

But I have to keep on keeping on and I have to work.

Celia xx

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Post  annajamey on Sat Apr 04, 2020 4:02 am

New to here and just read this message.

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Post  Lesley Niyori on Sat Apr 04, 2020 12:01 pm

Welcome anna.

We go in bursts around here. Quiet for a few days, then we are all abuzz over something.

You should likely post an intro about yourself so we get to know you.

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Post  Celia Eriksson on Sat Apr 04, 2020 3:57 pm

Hi Anna,

Yes, as Lesley says, we are a quiet little community and have flurries of activity then go a few days with little going on. Hope you stick around and yes, say hello on the introduction page.

Celia xx

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Post  Elizabeth Lynn on Sun Apr 05, 2020 7:36 am

Well, here we are.

My wife and I have been in Salt Lake City since March 4th.

Events since my last post:

Jan2 - told the chemo was no longer working. With no further treatment she had about two months to live.

Second week of Jan - told about a clinical trial underway at LDS Hospital. Considering the alternative, we asked for ?Lynn to be evaluated for enrollment.

Jan 17th - flew to SLC and met with one of the oncologists conducting the trial. Determined she fit the inclusion criteria.

Jan 20th - discharged from the rehab facility to home. A relief to be home.

Feb 8th - found out my younger brother passed away. Unable to attend his funeral.

Feb 12, 13, 14. Drove to SLC for further evaluation, still a go, had central line place in the morning of the 13th, in the enter noon underwent leukapherisis to collect T Lymphocytes. Cells sent to a lab and genetically modified to be able to seek out and kill B cells, both cancerous and healthy.

March 4 - returned to SLC for preparation to receive modified cells.

March 8th. CT found a catheter related blood clot around her central line. Started on enoxaparine anticoagulant. Return of cells delayed a week

March 9th - began self isolation to minimize any chance of exposure to COVID19. Only leave the house for appointments, always masked.

March 15, 16, 17 - received 3 days of chemotherapy to wipe out all her white cells so they don’t compete or interfere with the modified cells

March 23rd - finally received the treatment. Now to monitor for signs and symptoms of potential life threatening side effects. Taking temp 4 - 5 times a day, completing a writing sample daily and a phone call assessment by clinic nurses. Had planned to go into the clinic daily, but received permission from the study managers to go in every third day To further reduce exposure risk.

April 3rd - day 8, no side effects, now only temp each morning, no need for writing sample. We all breath a sigh of great relief. She has been feeling better, now can get into and out of bed, walk around the house with her walker. Could it be the treatment is already having an effect? White count 0, zip, nada. Maximum risk of infection. Taking antibiotic, antifungal and antiviral medications.

April 4th - had a CT scan and guided biopsy of an inguinal lymph node. We will note see any histopathology from this - sent to study sponsors as part of the study documentation.

Today, April 5th - Cabin Fever is setting in.

Future - April 16th, scheduled for a PET/CT scan to see if there is any tumor activity. April 21st, planned go home date. We will be back periodically for follow up for the next 2 years at which time she will graduate from the study.

Note: the experimental treatment is called Chimeric Antigen Receptor-T (CAR-T). It’s an immunotherapy method for treating certain blood cancers. There are 2 commercial (FDA approved) versions. She wasn’t a candidate doe either because the patient had to have failed 2 types of standard treatments. She didn’t have time to do this. This experimental version is to establish The effectiveness of used as a second line therapy.

Note 2: because of the Coronavirus pandemic, she was the last person enrolled. The study has been closed to new entrants until the pandemic has abated.

~ Liz

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Post  Celia Eriksson on Sun Apr 05, 2020 11:58 pm

Hi Liz,

I hope she recovers fully. I didn't quite get the last piece, did she not manage to enrol for the trial?

This is why we should make the best of every single day and it is why that those of you out there are lucky to have partners right now that have them. Sorry Liz for my sounding selfish, but she must be so grateful you are there. To have a loving baby right at this time must, anyway, be a good thing in these times, rather than be alone. And Liz, you are clearly a rock for her.

But, defining away from poor Liz's troubles.... coz I want to talk about love, read on Liz please.... at this time it's nigh on impossible to meet anyone, not that I was having much luck. I seem to get lots of interest, is it curiosity, is it me? For it all goes nowhere. Guys at work, checkout guys, friends of friends, but never ever anything solid these days, and I have had some pretty buff guys compliment me...

I kinda hope it's coz they think I'm unniaproachable. I kinda hope it's coz it's society. But I tend to realise that I am just simply too old, even though I would only recipirocatitate men of my own age or older....

But to have someone to care for, fall in love with, is hard to find.... keep hold of that one you love... nobody falls 'out of love', you only get bored of the 'situation'... when I find 'the one' now, I shall hold on to him tight and do everything right to keep him..

Well enough, for more important than my selfish rant is, that I hope Liz, that that your love pulls through and you can spend more years loving and cherishing each other. For love is all, love is the reason we exist....

Liz, love conquers all.... it defeats every negative aspect of the universe. It defeats hate, it defeats even death, for it is eternal.

Love gives the Universe the only good reason to exist.

My quote tonight from nowhere and.... it's true.

Celia xx

(Just need my own love..... selfish me)

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Post  Elizabeth Lynn on Mon Apr 06, 2020 1:11 am

Thank you Celia,

I don’t see youR statements as selfish at all. Everyone needs companionship and love.

She did get enrolled and did receive the treatment. The last note was to say that after she was enrolled, the trial closed to new candidates.

It closed when we began to see community spreading here in the western US. The concern being that new entrants may be infected but asymptomatic.

Should a study participant be infected, but proceed with treatment they would be at grave risk as they lose all immune responses for a period of time. Plus they would be a risk to other patients and staff and finally, these trials rely on controlling the treatment as much as possible and there’s no data to evaluate how treatment might be impacted by infection with a virus for which so little is known. That could skew the data and possibly invalidate the entire study, and delay or prevent the treatment receiving FDA approval.
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Post  Celia Eriksson on Mon Apr 06, 2020 11:13 pm

Hi Liz,

I understand that fully now. I wish her the very best of health from across the pond. Please take care honey,

Celia xx

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Post  MichaelaSJ on Tue Apr 07, 2020 3:09 am

Elizabeth Lynn wrote:Future - April 16th, scheduled for a PET/CT scan to see if there is any tumor activity.  April 21st, planned go home date.  We will be back periodically for follow up for the next 2 years at which time she will graduate from the study.
It is always, always best to talk in the future tense - and I truly hope the future is what gets discussed.

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If you don't want a man unhappy politically, don't give him two sides to a question to worry him; give him one. Better yet, give him none. Let him forget there is such a thing as war. If the Government is inefficient, top-heavy, and tax-mad, better it is all those than that people worry over it. Peace, Montag.
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Post  MichaelaSJ on Tue Apr 07, 2020 3:26 am

Welllllllllllllllllllllllllll (redux!)

I was back in the hospital last Wednesday - this time for some surgery Thursday afternoon. I had two intestinal adhesions, one proximal to the duodenum (where the stomach connects to the small bowel) and the other to the ileum (distal to the small bowel where it connects to the large intestine.)

Same surgeon as the one I had last June for similar issues. Good guy, well respected with a wickedly matching sense of humor. According to the surgeon, about 83% do not see further issues. Won;t bet the house with those odds, but looks good.

Got home mid-afternoon with about 20 staples sticking out of my belly, mild pain and no sit-ups for a long time.

Hospital was on lock down because of COVID-19. Even my Wife was not allowed to wait in the surgery waiting room. Thankfully, the surgeon called after the surgery and gave a good explanation of what he did, salving my Wife's anxiety for the moment.

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If you don't want a man unhappy politically, don't give him two sides to a question to worry him; give him one. Better yet, give him none. Let him forget there is such a thing as war. If the Government is inefficient, top-heavy, and tax-mad, better it is all those than that people worry over it. Peace, Montag.
Fahrenheit 451
“lifelong atheist, not afraid of burning in hell,” Ron Reagan FFRF
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Post  Celia Eriksson on Wed Apr 08, 2020 12:45 am

Hi Miki,

Glad to hear that you are home.... that sounds quite intrusive. Please keep well, bless you honey.

Celia xx

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Post  Michi on Sat Apr 11, 2020 5:05 pm

Glad to hear you are home Miki.

I am waiting to see if I'm going to be furloughed from my office job or not. We have been working at home so far but we all aren't needed.

I am still working at the restaurant only about 11 hours a week now. I don't know how long they're going to be in business.

I worry about my dog and other dogs too not being socialized for who-knows-how-long.

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Post  MichaelaSJ on Sun Apr 12, 2020 5:32 am

Michi wrote:Glad to hear you are home Miki.
Thank you Michi. I am spending way too much non-COVID 19 time in hospitals these days. (I don't want to be in a hospital for any reason!)
Michi wrote:I am waiting to see if I'm going to be furloughed from my office job or not. We have been working at home so far but we all aren't needed.

I am still working at the restaurant only about 11 hours a week now. I don't know how long they're going to be in business.
While I hope you get to keep your job(s). If you are in the U.S. and work at a W-2 job, then the new legislation should help out a bit.
Michi wrote:I worry about my dog and other dogs too not being socialized for who-knows-how-long.
When I was moved to a convalescent hospital last August, they allowed a pet dog to visit on Saturdays. My Wife and Daughter brought my 1.5 y/o Belgian Malinois. The dog hadn't seen me for over a month yet as soon as she saw me on the hospital bed, she bolted from my Daughter and climbed up on the bed next to me and was nuzzling me like she hadn't seen me for a year.

I don't think the dogs will lose their socialization skills.

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If you don't want a man unhappy politically, don't give him two sides to a question to worry him; give him one. Better yet, give him none. Let him forget there is such a thing as war. If the Government is inefficient, top-heavy, and tax-mad, better it is all those than that people worry over it. Peace, Montag.
Fahrenheit 451
“lifelong atheist, not afraid of burning in hell,” Ron Reagan FFRF
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