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How active are you in the real world these days?


Karen_L

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My husband is asking if I would like season tickets to performances of a small orchestra. The venue is a very old large church: soaring ceilings, balcony and main floor seating. We usually sit in the balcony overlooking the stage. 

Obvs, Covid, especially long Covid, is a concern. I have been very very conservative in my activities. I attend meetings and church only via Zoom; I do *not* eat in restaurants unless outside. I do attend soccer games in the huge stadium here, but they check vaccination cards before admission and I wear a mask the entire time. 

My husband is incredibly supportive, but he misses hearing live classical music terribly and would love for me to accompany him.

 I’d love to know what your parameters are for doing things in the Covid world. What are you doing? Not doing? What advice have you received? What advice would you have? Any thoughts would be welcome. 

I’m vaxxed and boosted to the max, FWIW.

Thanks in advance,

Karen

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Hi Karen…although Covid is still so scary we can’t totally give up enjoying life. As you are vaccinated and boosted, I say get the tickets. I do wear a mask if I go to the grocery store or to the casino. I am going to restaurants to eat and have attended a funeral gathering and bridal shower without a mask. I am vaxxed and boosted. 

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Karen,

Like many others I was vaxxed and boosted, wore masks out and practiced a lot of solitude and I still got Covid in June.  It was like a flu but antivirals helped me get over it pretty quickly.  Even before getting it I was out and about.  I know I have to take special care because of LC but I also know that the isolation I used to subject myself too was very damaging.  So, for my part, I'm reasonably careful, avoid places of high-risk, and enjoy life since I fought hard to keep it.   I hope you find a balance that works for you as well.

Lou

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Karen,

I'm also "vaxxed" and boosted but like Lou, I avoid high-risk activity indoors. I also love classical music, having studied classical piano for years but I didn't attend the last 2 years of concerts at the Dallas Symphony and I won't attend this season either. 

I'm a little vexed at the medical community telling us we have a COVID "vaccine". Obviously, they really stretched the definition of the word vaccine because it does not stop COVID. I have about 30-percent of total pulmonary capacity. A bad chest cold could kill me and COVID would plain do me in. So I isolate to stay alive.

Stay the course.

Tom

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I'm vaxxed and boosted and will be scheduling the new booster with my flu shot very soon because I'm 6 months out from my last booster. 

My husband and I have never had Covid to our knowledge. We have strict safety practices. We only socialize indoors with a small group of friends and family who are vaxxed, boosted and test negative. If someone who visits is coming off a plane, the visit is outdoors only. I've been to one restaurant in the last year and it was outdoor dining. Our biggest disappointment was having to cancel our attendance at an annual NFL reunion last month because we'd be indoors with too many people whose status we don't know. 

My biggest worry would be getting long Covid. I have fought hard to be healthy and am very risk-averse now. The thought of being in a crowd fills me with anxiety, and in fact my skin crawls when I have to go to Costco (even with a good mask). 

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Tom, Lou, Judy, Pstar,

How helpful your comments are. It's interesting to see how differently we are all approaching it.

I wish there were more clearcut guidelines. Recently on vacation, a friend was pushing for all of us to go out to dinner. I said I'd go, but only if it were outside. A whole commentary ensued about air circulation and open windows, until I shut it down. I thanked our friend and then said, "I do not eat in restaurants. Period. As I said, I'll be happy to sit outside." 

Tom, I appreciate how you must miss concerts. Lou, I think it's the high-risk places that are of greatest concern to me, too. 

Long Covid scares the pants off of me too, Judy. It sounds like my husband and I are handling things much the same way as you and yours, except mine is getting itchy to do what he loves. I've decided against returning to my work with teachers this year. I can't imagine not doing it, but when the paper runs a story about how anyone with a kid in school will get Covid and how to deal with it, I'm pretty persuaded. 

Thanks!

 

Karen

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Karen, it is inevitable that kids in school will get Covid, the flu and a bunch of other weird infections. My sister (who does not have cancer) got Covid last year from kids in the pre-school she is director of, despite all the cleaning and disinfecting--I don't think they wore masks anymore. She was fine but then she's healthy with no underlying conditions. She doesn't really understand why I still isolate, and I don't think that most healthy people can.

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Hi Karen, as I am new to this whole lung cancer thing and just recovering from surgery and chemo and will start tag soon, my family is very conservative. However, we have been the same since the pandemic began as I was protecting my mom who is high risk and we decided that cutting her from our life is not an option (little did I know then that I am the one who is extreme risk). We have already lost my grandfather to COVID, an uncle, another uncle's wife, and an uncle of my husband's (who all lived in different countries) so we know this disease can be a brutal killer.

We always mask outside home with N95 now, do not go anywhere indoors unless critical, enjoy curb-side pickup and home deliveries, do not go to restaurants (luckily I am a cook and a foodie), and we keep all our activities outdoors (still masked as no one respects distancing around here). Only recently did we start our kid in in-person school and he keeps an N95 on and we sign him out for quick lunch in the car. His school has MERV 13 and a commercial grade HEPA in each class. We are still worried but decided the risk vs reward given our precautions is worth it for his sake. 

As a scientist, I read papers coming out on COVID as they come and there is disturbingly mounting and clear evidence of (common) long term serious damage to vital organs even with very mild initial illness in the 1-2 years after infection (and we have no data beyond that), including sudden cardiac events, clots, brain disease which extends to pediatric patients etc. Before things become clearer or actual treatments are here, I think our family's life will be restricted long term as we hope to avoid infection, or at least, to limit viral loads and re-infections, which seem to be the real problem now as each re-infection seems to compound long term risks. Our family was the only one masked when we went to school the first day (a couple more kids wore cloth masks) but that does not deter us and we continue to turn down sit down dinner invitations etc although we know this is not making us any friends. Society has been misinformed that COVID is as benign as a cold and thus they act like the pandemic is over. It is definitely not the case and as my oncologist put it the other day, COVID is in the water now, meaning everywhere, as he was advising me to try my best not to catch it!

Checking COVID deaths in North America shows the horrifying toll stands to this day. Vaccinations seem to have reduced death risk by a lot but not infections nor long term complications. I still intend to get the bivalent vaccine when it arrives here in 2 weeks (had 2 doses + booster so far) but know that current vaccines have limitations and should be part of wider mitigation steps.

People are extremely different in their balancing of risk/reward so very hard to give advice. Just one more data point for you from a fellow lung cancer survivor. Wishing you a safe and enjoyable Fall season!

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As a a coda to Lily's comprehensive explanation of the COVID risk and downside, consider that most of us live in free societies. Freedom is a right, not a duty. We have the absolute right to protect ourselves, but we do not have the right to expect others to conform to our protection measures. We seem to have forgotten this and thus protection strategies, vaccination and the like became a "political issue." 

I have a high mortality risk for any pulmonary malady, especially COVID. To live, I have to take measures to protect myself. Outside of the confines of my homestead, I can't expect others to abide by my measures. Similarly, I can't expect my neighbors to eat healthy, drive safely, drink responsibly, or even get a flu shot. In a free society, we are free to engage in a multitude of life-threatening behaviors. We are even free to kill ourselves; there is no law against drug overdose or even suicide!

With freedom comes the duty of personal responsibility. I am responsible for the health, safety, and well being of my family and no others. People have always had differing ideas for risk and reward balancing. That will never change. Look after yourself and your family and...

Stay the course.

Tom

 

 

 

 

 

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1 hour ago, Tom Galli said:

As a a coda to Lily's comprehensive explanation of the COVID risk and downside, consider that most of us live in free societies. Freedom is a right, not a duty. We have the absolute right to protect ourselves, but we do not have the right to expect others to conform to our protection measures. We seem to have forgotten this and thus protection strategies, vaccination and the like became a "political issue." 

I have a high mortality risk for any pulmonary malady, especially COVID. To live, I have to take measures to protect myself. Outside of the confines of my homestead, I can't expect others to abide by my measures. Similarly, I can't expect my neighbors to eat healthy, drive safely, drink responsibly, or even get a flu shot. In a free society, we are free to engage in a multitude of life-threatening behaviors. We are even free to kill ourselves; there is no law against drug overdose or even suicide!

With freedom comes the duty of personal responsibility. I am responsible for the health, safety, and well being of my family and no others. People have always had differing ideas for risk and reward balancing. That will never change. Look after yourself and your family and...

Stay the course.

Tom

 

 

 

 

 

I agree with you Tom that personal responsibility is very important but feel that such an approach makes more sense in other kinds of risks than a novel serious respiratory virus that spreads in the air (we have no jurisdiction on the air we breath). When someone eats unhealthy heart clogging diet, they only affect themselves. If someone goes skiing in marked avalanche back country, they only affect themselves (although even then, it breaks my heart how they often put rescue personnel in harms way). When someone deliberately spreads a terrible virus in the air publicly, things are not the same anymore as personal responsibility cannot protect you anymore.

I totally support consent in vaccinations but also worry a lot that anti-facts are becoming so mainstream that polio (polio! the only disease humans managed to totally eradicate) is making it back as a measurable virus in the sewage of the richest city on earth. If society is not careful, I fear extreme individualism will be the end of civilization.  Whether it is crumbling eco systems or novel and re-emerging pandemics, we have to be very careful about supporting public health and public measures. We restrict so many public behaviours that are dangerous to public health, e.g., we "prohibit" someone with Cholera to leave quarantine, we "do not allow" people with hepatitis to handle our food, we "force" drivers to wear seatbelts, we "force" kids to be in car seats, we "force" cities to treat drinking water so it is safe... We do so because all these public measures are proven life saving measures.

So it pains me that schools where I live send kids who have lice home, but not if they have COVID! This is insane. COVID is a neurotropic disease with coagulopathy capabilities; it is not "just a cold". The disconnect in society is sobering and may have tremendous implications if indeed COVID turns out to be a long term mass disabling event. I sincerely hope it won't be but hope is not a good public health policy, harm reduction and the cautionary principle is. I personally believe that as humans stopped drinking untreated water that used to kill millions, we need to stop breathing pathogen laden air. We can do it easily with indoor ventilation and CO2 monitoring, breaking infection cycles, and taking care of earth so that the quality of air outside is not continuously pushed to toxic levels. Sorry if this topic is a tangent to our typical lung cancer discussions.

Keep safe everyone while enjoying life too.

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17 hours ago, LilyMir said:

As a scientist, I read papers coming out on COVID as they come and there is disturbingly mounting and clear evidence of (common) long term serious damage to vital organs even with very mild initial illness in the 1-2 years after infection (and we have no data beyond that), including sudden cardiac events, clots, brain disease which extends to pediatric patients etc. Before things become clearer or actual treatments are here, I think our family's life will be restricted long term as we hope to avoid infection, or at least, to limit viral loads and re-infections, which seem to be the real problem now as each re-infection seems to compound long term risks. Our family was the only one masked when we went to school the first day (a couple more kids wore cloth masks) but that does not deter us and we continue to turn down sit down dinner invitations etc although we know this is not making us any friends. Society has been misinformed that COVID is as benign as a cold and thus they act like the pandemic is over. It is definitely not the case and as my oncologist put it the other day, COVID is in the water now, meaning everywhere, as he was advising me to try my best not to catch it!

Checking COVID deaths in North America shows the horrifying toll stands to this day. Vaccinations seem to have reduced death risk by a lot but not infections nor long term complications. I still intend to get the bivalent vaccine when it arrives here in 2 weeks (had 2 doses + booster so far) but know that current vaccines have limitations and should be part of wider mitigation steps.

LilyMir, 

Thank you so much for sharing. It helps me ground my instinctive response with perspectives from a scientific viewpoint. I've passed your info to my husband and will pass on attending concerts this season. 

Karen

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Just today I picked up an article about impacts of Covid on the brain. “One of Long Covid’s “Worst Symptoms Is Also Its Most Misunderstood” is about so-called “brain fog.” It’s sobering. From the article

Quote

It is not psychosomatic, and involves real changes to the structure and chemistry of the brain….At its core,…., it is almost always a disorder of ‘executive function’—the set of mental abilities that includes focusing attention, holding information in mind, and blocking out distractions. These skills are so foundational that when they crumble, much of a person’s cognitive edifice collapses. Anything involving concentration, multitasking, and planning—that is, almost everything important—becomes absurdly arduous.

A neuro-oncologist at Stanford thinks Covid damages the brain without infecting it directly. She and her team showed that “when mice experience mild bouts of COVID, inflammatory chemicals can travel from the lungs to the brain.”
 

We all know how much lung cancer likes the brain…the parallels between brain mets and Covid are interesting. 

I can’t begin to imagine the long term damage Covid does to the lungs. I do not need to be coping with anything more than lung cancer. No concerts for me, for sure!

https://www.theatlantic.com/health/archive/2022/09/long-covid-brain-fog-symptom-executive-function/671393/

 

 

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I’m just now 2 weeks post covid and tested negative two days ago. And, I’ve been careful but obviously not careful enough. Vaxed and boosted except for the new bivalent  which I’ve been told I have to wait a couple of months for due to recent infection. I think it happened when we drove up to Wyoming to pick up a nephew who had just finished a paleontology dig.  Still lots of overwhelming fatigue - up for several hours then have to rest. So, be careful and do what YOU need to do. Let me know if I seem brainfogged, would ya? Weird days we’re living in.

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Aw, I'm so sorry. Are you the only one who got Covid? It seems so random sometimes. And, your experience is exactly what I want to avoid. I'll keep an eye out for brainfog, but I think you're good, at least today. 😉

K

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  • 1 year later...

This is interesting that this topic was recently refreshed.

We are entering a new COVID season, complicated by the emergence of RSV (Respiratory Syncytial Virus) and of course the flu. I will get all the shots and boosters. I'm also seeing masking and social distancing as topics of discussion on social media. Yes, I lost about 2 years of social engagement by isolating myself during the pandemic but I am alive. I am planning to isolate again as my strategy for avoiding infection because of my very marginal pulmonary capacity.

I can only control what I do and self-isolation is inconvenient and boring but I am alive to be inconvenienced!

Stay the course.

Tom

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Indeed Tom, there is a big uptick where I live and many people are reporting being sick again. I am getting more careful again though I never unmasked in general but started to do things with some risk like unmasking to swim at a public pool, eating on the side indoors at a (very well ventilated) friends house and downgrading N95 mask from head loops to ear loops. Tightening all that now for the Fall. My husband just had another health scare and we certainly are of the philosophy that masking may at times be socially isolating and occasionally inconvenient but surviving and being as healthy as possible so our little boy is not orphaned is all what matters. Stay safe.

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I'm getting more careful again, too. I had been getting lax about masking, but now getting back to it. Ugh! My wife is getting chemo for a recurrent breast cancer, so another motivation for being careful--not passing anything, even a cold, to her.

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i have changed very little because of covid - i do watch my blood tests and they have remained remarkably normal - i was getting a neulasta type shot when i was on carboplatin but that was dropped when the oncologist dropped the carboplatin

i did take 3 covid vaccines only because i was caring for my 96 year old mother - i did test positive once but since i has no symptoms, i suspect the test was wrong (free government home test)

i have by doubts about the covid info we are fed - the vax did NOT prevent covid - our hospitals were incentivized to classify deaths with covid as death caused by covid (as well as the survivors getting money for funeral costs) -  vaers reporting was discouraged (if not forbidden by some hospitals) - i am not saying covid is not serious - i am saying we don't know how serious it is

if you think that sounds wacky - my journey into cancer closely resembles this

https://www.theatlantic.com/science/archive/2022/09/mrna-covid-vaccine-booster-lymphoma-cancer/671308/

with dissenting medical opinions censored on a rushed first ever mrna vax, i suspect we will learn of lots of problems caused by these vaccines

as far as karens forcing me to change for their safety:

“Those who would give up essential Liberty, to purchase a little temporary Safety, deserve neither Liberty nor Safety” - Benjamin Franklin

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polio was never eradicated from the planet - but it is making a comeback - with drug resistant tb - and others

my guess is that our borders open to anyone - that are never tested - from countries where drugs are not restricted to prescription - contribute more than my extreme individualism

 

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