A New Year

All right, the picture here is of me and our new family member, Jayden. Jayden is a Serama chicken. Lynn raised her from an egg and she follows Lynn around constantly. I think that Jayden sees Lynn as her mother hen because she wasn’t raised with any other chickens, just us.

While Lynn is the mother hen in Jayden’s eyes, Jayden has also accepted me as part of her flock. When Lynn is busy elsewhere, Jayden follows me around. This picture was my attempt to take a photo of her with my iPhone. As I was framing the shot, she jumped on top 0f the phone so I quickly switched to selfie mode. Jayden was fascinated with her own image on the phone display and was pecking at it when I took this photo.

That’s the big news for us. The newest member of our family is a house-chicken. I would have thought that was crazy a year ago, but after a year of craziness, crazy is the new normal. While 2020 was mostly forgettable (at least we’d like to forget it), we’re looking forward to creating memories that we want to remember in 2021. Part of that means getting out of the house and finding safe activities to do so we don’t get any stir-crazier than we already are. I’ve been fortunate in that I’ve been able to work from home and Lynn is also at home now, but the downside is that we never go out in public unless it’s to places where we’re sure of not running into any other people. We get our groceries and other necessities delivered. I get my prescriptions filled online and pick them up at the drive-through. We only interact with friends and family via phone or video-chat.

In other words, we live like shut-ins. What are we afraid of? Yes, there is the COVID-19 thing that is going stronger than ever, but what is our true risk? It’s hard to say because we don’t know what information to trust, but there’s always some risk somewhere. As Lynn and I were discussing today, there were no sure answers when I got my melanoma diagnosis. I wasn’t sure what the best treatment option was but I made a choice. As it turns out, the treatment worked for the melanoma but I ended up with Type 1 Diabetes.

Life is like that. You gather as much information as you can, you weigh the pros and cons, and you make a decision based on the information that is available to you at the time. Or maybe you just trust your gut. Either way, your decision could be right or it could be wrong. There are no guarantees. Living in fear, however; living in the in-between is not really living at all. To truly embrace life is to embrace risk — the risk of getting hurt or the risk of getting sick. In regard to the virus, we will be careful. Social distance, mask up, and keep exposure to a minimum. We certainly do not want to spread anything to each other or to anyone else as unlikely as that would be considering how careful we have been and will be.

I’m not a big believer in New Year’s resolutions. On the few occasions that I’ve made them, I’ve done a poor job of keeping them. This year, my resolution is simple. Stay alive and live a life worth living.

Melanoma update: No news, my health is good and my next scans are a month away. Happy New Year!

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Checking in

First, I can’t believe that I haven’t posted an update since June! No, excuses really. at least nothing medical. My health has continued to be great. My most recent scans were on October 7th, and were again clear of active melanoma. Yay! I have a another scan scheduled for next February and if those are clear I will go to having scans every six months. Because of Covid-19, I had my visit with my oncologist virtually via video. I did the lab work the day before, so he had access to the lab results as well as the radiologists’ readings of my scan by the time of my visit. The only thing missing was the physical examination, which mostly consists of him palpating my body in search of swollen lymph nodes. I think that I now know enough what to look for. so that I can kind of check those out myself. I haven’t found anything swollen or unusual.

Anyway, as I said, the news was all good on the melanoma front. Things are pretty good on other fronts as well. When last I posted here, I was still unemployed. Well, in early September I started a new job. It’s a cut in pay from my old job, but a step up from unemployment. Plus, it comes with health insurance. While the health insurance is also a step down from what I had in my old job, it’s cheaper than paying COBRA, maybe. Right now I’m having an issue because my new insurance doesn’t cover my CGM (Continuous Glucose Monitor) supplies as a pharmacy benefit, but as DME (Durable Medical Equipment). This means that instead of being treated as a prescription benefit like insulin, it’s treated like a wheelchair. It also means that instead of paying a reasonable copay, I have to pay 50% after my deductible is met. I’m not happy about that because these supplies are not cheap (about $1800 for a 90-day supply), but I rely on them for the management of the Type 1 Diabetes that I acquired as a side effect of immunotherapy. There are cheaper alternatives for taking blood glucose measurements. but the GGM I have been using is the only one that gives me continuous real-time readings. It can even alert me if my blood sugar drops low while I’m sleeping, a potentially deadly event. I plan to call the them again tomorrow, but I’m not optimistic. I hate insurance companies.

Enough whining about that. I’m very happy to have a job, any job. Luckily, it’s a work-from-home job for now, although I will have to go into the office at some point, which I’m not thrilled about given the current situation. When I interviewed for the job, I was told that it would be entirely remote until the COVID-19 thing had settled down. Of course, it’s nowhere near being settled down. In fact. there’s currently a travel ban between my state (Connecticut) and the state where my company is located (Massachusetts), so I don’t think I’m even allowed to travel if I wanted to, which I don’t.

Lynn and I continue to hunker down. We don’t go out and we have our food and other essentials delivered. Tonight, we treated ourselves to pizza, but that involved a lot of jumping around, putting on masks, gloves, washing hands and being careful. Our town has a high positivity rate (over 20%) and we weren’t keen on getting close to a delivery guy who goes from house to house in this town, even if was just to sign for the pizzas and bring them into the house.

I was going to write something about the U.S. Presidential election that we had (are having) this week, but I’m feeling kind of burned out on all of that. I’m guessing you are, too.

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My new normal

One of the phrases that gets under my skin during this pandemic is “the new normal.” I won’t go into why that phrase irks me right now, but I’ve found that it can also apply to living with melanoma. At least it does after you’ve beaten it back and have a few clean scans under your belt. Or at least it does after I’ve beaten it back and have a few clean scans under my belt. I’m only speaking for myself here.

On Tuesday, Lynn and I received the news that my latest scans again showed no evidence of active disease. Today, I received emails letting me know that the radiologists’ reports for those scans had been posted to my online account. Normally (there’s that word again), I would have logged right in and scoured the reports for any hint of the smallest area of concern. Radiologists are paid to look for stuff and report every little thing that they see. That’s their job. Don’t get me wrong, I’m glad that they do that and I hope that they do it well and don’t miss anything. It’s just that, I’m not eager to look for something wrong when I’ve already been told by my doctor that nothing is wrong. I’m putting my trust in him and letting him handle the medical details. So, I guess that represents a new normal for me.

When I was first diagnosed, we tried to find out everything that we could about my melanoma. We sought second and third opinions, and we scoured the internet trying to figure out what to do and what to expect. When I got diabetes and colitis as side effects of immunotherapy, we researched the hell out of those things, too. That was far from normal, and it consumed a lot of our time and mental energy. At first we didn’t know if the therapy would work, and then we weren’t sure if the therapy wouldn’t kill me. There was a lot we didn’t know and we were fumbling in the dark looking for the light switch.

Now, after 16 months of clean scans, neither of us feels the need to question everything or to follow the latest research. I know that would change if I got a not-so-good scan, but for now we’re kind of putting melanoma in the back of our minds and focusing on other things. That’s the new normal around here.

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Something to celebrate

The bottle of beer on the left had been tucked away in the back of the refrigerator for a few months. Duvel is probably my favorite beer in the world (and I love beer), but I was saving it for when I got a job offer. Well, I am still available for offers of employment, but I did have something else to celebrate.

Lynn and I met with my oncologist via video call on Tuesday to receive the good news. My scans are still clean. There were a couple of small things with my blood work (LDH at around 400 and liver enzymes just barely out of the standard range), but nothing he seem concerned about. I know I’m not concerned about it. He wished us both a great summer and I’m to schedule my next scans for four months from now. So Prost! to that.

In other news, today is our 16th wedding anniversary, so that is something else to celebrate. Today we stopped at a local ice cream stand for ice cream. It was our first “dining out” experience since COVID-19 up-ended all of our lives. We only stopped in because the place didn’t look busy. It wasn’t busy when we stopped, but by the time we placed our orders, paid, collected our ice creams and took them back to our car to eat them, the place got much busier. We saw several people not wearing masks, or not wearing them correctly. Is wearing a mask covering your mouth but not your nose a thing now? Anyway, we were both glad that we arrived when we did and we both enjoyed the hell out of our ice creams. Who knows, it may be a long time before we get another one.

As Warren Zevon saod, “Enjoy every sandwich.” Or ice cream. Or beer. Or moment.

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Random thoughts, part 2

I’m going to finish my post from yesterday, discussing some non-melanoma things that are on my mind. First, though, I should mention again that Lynn and I are meeting with my oncologist via telehealth (video) call this afternoon to learn the results of my latest scans. I’m not too nervous because I feel good and my blood work was pretty good. I can’t say, however, that I am not a little anxious. I think that’s mostly because my luck has not been really great lately. I would welcome some good news this afternoon.

As for my luck, well I share the bad luck with everyone who has been affected by this COVID-19 pandemic. In our case, we are still sheltering in place as much as possible, our recent visits to two hospitals not withstanding. We feel isolated and alone. We can converse with loved ones over the phone and via the internet, but it’s not the same as being together with them physically and being able to give them a hug or even hold their hand. These days, when we do venture out, we see people wearing masks and you can only see their eyes to judge the expression on their faces. We also see a lot of people not wearing masks, which I’ll get to. When I see people wearing masks, I’m reminded of the John Prine song, “Hello in There.”

So if you’re walking down the street sometime

And see some hollow ancient eyes,

Please don’t just pass ’em by and stare

As if you didn’t care,

Say “Hello in there, hello.”

John Prine — “Hello in There”

People in masks look trapped to me, and I feel trapped, physically, socially and emotionally. Trapped in my house, trapped behind a mask, and trapped inside my body. I think I would have ventured out by now (I would kill for an ice cream cone) if I weren’t high risk because of my asthma and diabetes. I’ve made a promise to Lynn that I would limit my exposure when I go out and don’t do anything that isn’t absolutely necessary in order to reduce the risk of catching this damn virus. I would feel bad if I caught it, mostly because I wouldn’t want to give it to Lynn. As far as my own health goes, I’m willing to adopt a Que Sera, Sera attitude.

Speaking of isolation, my hearing has been going out on me. I’ve had so-called age-related hearing loss for years now, but lately it has gotten much worse. I think it’s just earwax buildup, but I can’t seem to clear it out, although I’ve tried multiple things with no success. If it weren’t for this pandemic, I would have gone to the doctor and at least gotten my ears cleaned by now. What this hearing loss means is that I have trouble hearing Lynn when she speaks. Sometime she speaks and I have to ask her two or three times to repeat herself; sometimes she speaks and I don’t hear her at all. This is frustrating as hell for Lynn as it increases her sense of isolation. The only person she has to talk to most of the time can’t even hear her. She says that it’s worse than being alone, because if she were alone she wouldn’t try to speak to the walls, which is what she equates speaking to me with most of the time. It’s frustrating to me, too, because I want to hear her and I can’t. I used to blame her for not speaking loudly enough, but now I know the problem is definitely on my end. I feel like I’m losing contact with the every part of the world and retracting into my own body. This inability to communicate is putting a lot of strain on our relationship.

What else is there? Oh yeah, I’m still unemployed. I’ve recently passed the five-month mark and my prospects for employment do not look good. I thought I was really close to landing something a couple of weeks ago. I made it to the fourth round of interviews. It was a job that I was very qualified for, almost identical to my previous job, and one that I was very excited about. Well, I didn’t get it, and since then crickets. I still apply for random jobs to satisfy the unemployment people, but my heart isn’t in it. I think after you’ve been out of work for this long, employers look at you as tainted goods. I now feel like someone who is thrashing in the water, trying to stay afloat until help arrives. After wearing yourself out, you kind of accept your fate, relax, and embrace the water. I feel that way about a lot of things these days. I can keep treading water, but at a certain point I’m going to have to accept that this is it.

Anyway, if I haven’t depressed the crap out of you by now, come back later, or maybe tomorrow for results of my scans, and further musings.

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Random thoughts, part 1

I usually try to think of a theme for my posts here, but I have so many thoughts running around my head these days that it’s hard to focus on one. I also try to think of something positive to add so that someone who comes to this site searching for hopeful information about melanoma doesn’t get too disheartened by what they read here just because I might be having a bad day. As far as the melanoma goes, the good days far outnumber the bad. I have to keep reminding myself of that, even when I get down because of the other things going on in the world and in my life.

First the melanoma report. I have been NED since at least February of last year. I feel good. On Saturday, I went to Yale to have my 4-month scans (delayed slightly because of COVID-19) and to have blood work. I have a telemedicine video call with my doctor tomorrow afternoon to discuss the results of the scans. I have already received the results of the blood work and everything looks pretty good. I even had some tests done for my endocrinologist to follow up on my diabetes management and even those look good. My thyroid levels are normal and my cholesterol is back in the normal range. Yay! No statins for me. While I’m still a little nervous about the results of the scans, not overly so, because I feel good and the blood work is good, so why shouldn’t the scans be good?

Saturday’s visit to Yale was my first visit to a hospital or any other type of medical facility since the coronavirus hit the fan. I was much more nervous about that than about the scans themselves. I was was originally scheduled to have my blood work, CT scan and MRI done on the same day, but at three different facilities within the Yale system. I was nervous enough about going to one facility, let alone three. so I rescheduled my scans to all happen at Yale’s Saint Raphael campus. It was my first time there, and I hope my last. I’m willing to cut them some slack because they’re dealing with operating during a pandemic, but I thought some of the staff members lacked the professionalism that I’ve come to expect from Yale. The good news is that this was Saturday and the place was not very busy at all. As for the bad news, I interacted with two staff members (Radiology receptionist and MRI tech) whose idea of wearing a face mask was to cover their mouth, but not their nose. No one is allowed to enter without a face mask. Lynn gave me an N95 mask which I wore in but had to swap out for a hospital supplied mask because the N95 mask had metal around the nose portion of the mask. I wore that mask for the rest of my visit. I’m not sure how the hospital staff gets away with only partially covering their face.

Then, there was a mix-up between my MRI and CT scans. After the MRI, I was parked in the waiting area and told someone would come and get me to bring me for my CT scan. Apparently, the MRI people thought the CT people were going to do that and the CT people thought the MRI people were going to do that. I waited there for 45 minutes before that was straightened out. Then, when I did get to the CT scan, the tech almost blew out a vein injecting the contrast fluid (or saline, I’m not sure which) too fast. I let out a loud OW! and he slowed down. I’ve never had that experience before and I don’t know if the guy was in a hurry or just not very good at his job but it hurt like hell and that area was sore and swollen for some time after that. After all this I was able to take off that darn mask and drive myself home. Lynn did not accompany me there because patients are not allowed to have anyone with them in the hospital for these visits.

And guess what? The next day we end up going to another hospital. Without going into details and violating HIPAA regulations, Lynn had been dealing with an issue that she hoped would clear up on its own. Sunday morning she had intense pain that scared us both enough to make a trip to the local ER. It turned out to be not serious but there I was again in another hospital, this time with Lynn. She was just as anxious in the hospital as I was the day before, probably more so. It wasn’t too bad, the ER was not busy at all. This pandemic seems to be cutting down on the number of people who go to the hospital voluntarily. The staff were professional, we didn’t have to come within 6 feet of too many people, and we were out of there in a couple of hours. Still, we’ll both feel better after 14 days or so and we know that we didn’t catch anything this weekend. I’m also glad that my doctor’s appointment tomorrow is a video call.

There are a few more things that I wanted to write about in this post. That’s why I titled it “Random thoughts.” I think this post is long enough for now and I cover the other things tomorrow. Take care and stay safe.

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I just received a phone call from someone doing a survey for melanoma research. I apologize if the name of the research study escapes me, it was short phone call. The woman on the phone asked me if I had active melanoma and I replied that, as of my most recent scans, I showed no evidence of active disease. She said that that was good for me but bad for her because that status made me ineligible for her study. I told her that I was glad to be ineligible and wished her luck and good day. Nothing like being ineligible for a cancer study to put one in a generous mood.

So yes, I still have no active disease, at least according to my most recent scans. I feel great so I have every reason to expect that my melanoma status has not changed. I have more scans scheduled for next month (my last were in late January). At first I thought I would postpone them due to the current COVID-19 crisis. I mean, healthy people should probably avoid hospitals now, right? That is, unless one is a health-care worker (hats off to them). But then I figured that things could be even worse later this summer or early fall. I don’t want to stop getting scans entirely, no matter how good I feel. So I guess I’ll go and have them done.

The doctor’s office did notify me that there has been a change of venue. Instead of having the scans at the main hospital where I usually have them done, they’ve been moved to a satellite campus nearby. I’m still nervous. In addition to entering a medical facility (hell, I don’t feel comfortable enough now to go to a grocery store) during a pandemic, I’ll be placed in tubes that I can only trust have been sanitized properly before I get in them. Lynn usually accompanies me to my scans, but she has wisely decided to stay home this time. There’s no point both of us risking exposure. I’m not even sure if she’d be allowed to wait in the waiting room or what the situation will be. Right now, we both see the virus as a bigger threat than the cancer.

There is also the matter of my consult with the doctor. Usually what happens is I have the blood-work and scans one day and then I meet with my oncologist a day or two after so he can examine me (basically he just palpates a few lymph nodes) and give me the results of the scans (not in that order). I’m going to see if he can forego the palpating and just read me the results over the phone or via a video meeting. I don’t see the need for the added risk and I’m not making a second trip to the hospital regardless. I think he’ll understand. These are crazy times.

As for the current crisis, we’ve both been sheltering in place. We make one trip out per month to pick up medicine (mainly insulin) at the pharmacy and we also run other errands the same day. That way, even though we’ve risked exposure, we’ll both know 14 days later that we’re probably safe, haven’t contracted the virus, and can’t pass it on to others. We get most groceries from doing online ordering and delivery, and we order other supplies from Amazon or other online retailers. Our recycling bin is stuffed to the brim with cardboard boxes every week. We now have about a three month supply of food, in addition to the fresh eggs that our hens supply. Our shopping now is just to replace what we use out of that stockpile.

As the various states start to reopen, we are both adamant that we’re not ready to go out there. We don’t think the state or federal government is telling us the truth and that the situation is worse than they’re letting on. I’m not sure how long we can sustain this. At some point our unemployment benefits will run out. I’m hoping to find work before that happens but I can’t count on it. I’m only looking at jobs were I could work from home 100% of the time, and while those jobs are out there, the competition is fierce. I had a phone screen for one such job yesterday. I know I was beyond qualified and I thought the interview went great, but I haven’t heard back yet, so I’m not counting my chickens. As the governor of this state is fond of saying, “hope for the best, and plan for the worst.”

I hope everyone out there is doing well. I’ll probably not post again until after my next scans. Wish us all luck and please be safe out there, or better yet, in there. And for all the melanoma warriors out there, I hope that you are ineligible, too!

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15 Days

Lynn and I have been self-isolating for 15 days now. This means that we have not gone to the store, we have not visited friends or family, we have not had friends and family visit us, we have not gotten together with anyone in public places. The closest we have come to in-person human contact is saying a socially distant “hello” to strangers we meet when walking in the cemetery.

I mention this because we hear about people who say they are self-isolating, but then they are just “running out to the store for a few things,” or “just getting together with so-and-so,” etc. I’m not here to judge, but when the stakes are so high, I think people should take this pandemic thing very, very seriously. If most of the experts are correct, people with COVID-19 infection will start showing symptoms within 14 days. If they are correct (big if), Lynn and I are not infected. This means that we can not spread it to each other or anyone else unless we go out and become newly infected. Of course, the experts don’t all agree and some claim that the incubation period could be as high as 21 days. For this reason, I’d like to continue our self-isolation for another week, just to be cautious.

At some point, we will have to leave the house, but for the time being we have everything we need at home. I’m not sure what the world will look like when we do venture back into it. Will everyone be wearing masks and gloves? What will the world be like if you can’t tell if someone is smiling or frowning? How long will we continue to look at outsiders (people who haven’t quarantined with us) as potential carriers of death? What will our social interactions be like? When will parks and movie theaters and concert halls, not to mention restaurants and pubs, be filled again with people? I don’t have the answers. I don’t think anyone does because there is still so much unknown, but these are the kinds of things I think about with the time I have between reading the news on the internet and watch the news briefings on television.

This blog is supposed to be about one couple’s journey with melanoma. Who knew when we started our journey that it would join paths with the world’s journey with a global pandemic? As far the melanoma is concerned, I feel fine and there’s nothing new since my last scans. My next scans are scheduled for early June, but I’m thinking those might get pushed out. Even if I dared by then to go into a hospital again, the hospital might be busy with other things. My scan interval was recently changed from every three months to every four. Maybe now, we’ll jump straight to every six. I’ll have to see what my doctor says about that.

As I said, I feel good, but I don’t think that I am invulnerable. At first, I laughed off people’s suggestions that I was high risk due to my melanoma, diabetes and asthma. I figured that 1. I did not have active melanoma and was not on any immuno-suppressive therapy, and 2. my diabetes and asthma were both well-controlled, so I didn’t consider myself high-risk. For weeks, however, I have been reading about healthy people with no known risk factors going from fit to very ill almost over-night. I’m not as confident as before. Just because I feel strong doesn’t mean that a tiny little virus can’t take me down. Melanoma was scary, but I always figured that I’d have time to try different treatments. If one treatment didn’t work, then I could try another treatment. I also assumed that I would always have ready access to some of the best health care in the world. This COVID-19 is a different animal. It can take you suddenly and when it does you may have access at best to hurried and harried, overloaded and overworked health care.

So we sit home and wait. It’s kind of like one of those apocalyptic movies where the few survivors of some dreaded plague or nuclear catastrophe sit in their cellars and wait for signs that it’s safe to leave their sanctuaries. I don’t know when it will ever be safe, and as I said, and I don’t know what kind of world we will find when we do venture out into it. Lynn and I have talked about it and she was saying how much air travel changed after 9/11. There will be changes after this but on a wider scale because this virus and others like it will touch almost every aspect of our lives. I feel sorry for my kids and the kids they might have, because the world they inherit will likely be a lot less innocent than the one we grew up in. Even if we survive, so much will be lost.

Will we learn anything from this, other than that talking about preparing for a disaster isn’t the same as actually preparing for it? I don’t know. I’d like to think that the people of this world will take this timeout to re-evaluate their priorities. I’d like to think that they’d see how fragile everything is and what’s really important isn’t the money you can accumulate or the things you can buy with it, but the human connections. I’d like to think that people would learn to value those connections, not just with family and friends, but with strangers we haven’t met. This virus is teaching us in a bizarre way just how inter-connected we are and how much we all depend on each other, from the doctor in the ER, to the checkout girl at the supermarket, to the factory worker in China. We all need each other, a lot more than we need the next shiny bauble.

I’ll leave it at that. Stay safe, everyone.

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Notes from a lock-down

I’m not so worried about melanoma or diabetes these days. My new worry is COVID-19. Lynn and I are in lock-down. Ten days ago, I bought a bunch of groceries, or at least as much as I could given the limited stock of many items on the store shelves. We figure that we have about enough food and other essentials to last at least a month before we have to think about restocking. We also have three laying hens that are giving us fresh eggs every day, so as long as we can keep them supplied with feed, that’s another food source. So, we’re not so worried about running out of food (at least in the near term), but we are worried.

People keep asking Lynn “how is Rich doing?” When they ask this, they are referring to my cancer, thinking that everyone who has cancer or cancer treatment is immuno-compromised. I’m not immuno-compromised, having been on immunotherapy drugs and not chemo, but they seem to forget that, no matter how many times they’ve been told. There is a hypothetical chance that I could be at increased risk of cytokine storm, but there is so much that is unknown about this “novel” virus that nobody can say with certainty. I am, however, at increased risk for other reasons. I’m 63 years old. I’ve read some advisories that suggest people over 60 should shelter in place, while other advisories have raised that number to over 70. I guess I should play it safe and go with the lower number. In addition to my age, I have two other risk factors — asthma and diabetes. Both are well controlled at the moment, but the statistics out of China report a higher incident of death from COVID-19 in patients with those two underlying morbidities. Underlying morbidities. Sounds pretty, well, morbid, doesn’t it?

We don’t know what’s out there or how long this situation will last, but since that shopping trip (and Lynn’s trip to the post office that same day to pick up baby chicks that she ordered), we’ve been self-isolating at home, or sheltering in place, whatever you call it. I’m still unemployed and Lynn is furloughed so we don’t have to go anywhere, but not being able to go out for so much as a cup of coffee, has us both feeling restless and fearful. We have a lot of time on our hands now, which we both spend too much of by reading or watching the news. We keep watching the death tolls go up with no peak, let alone any end in sight. After ten days, we are both fairly confident that we do not have the virus, but we worry about others. We worry about our kids who are not isolating. They tell us that they have restricted their movements, but we know they haven’t limited their exposure completely. We worry that they could get sick and we wouldn’t even be able to see them. We read about people who are sick and dying alone and it breaks our hearts. In Italy, people can’t even get buried and people can’t even say good-bye to their loved ones. Who thought that we’d live to see a day like this? The experts warned us, but we could not imagine it and I think that’s why we were so unprepared for it. It’s like something out of a science fiction novel. Maybe that’s why they’re calling it a “novel” virus.

In addition to fear, Lynn is feeling a lot of anger. I shouldn’t speak for her, and I won’t, except to say that I understand her anger. We’re both upset about our government leaders who have not prepared the country for this, and we’re both upset about a system that prioritizes profits over people. When I hear people in government talk about the “trade-offs” of protecting lives versus protecting the economy, it makes me sick to my stomach. I’m not naive and I always knew that in a capitalist society the bottom line is the bottom line, but to hear officials say it out loud and without apology makes me sad for humanity. Other things that make me sad are people who refuse to shelter-in-place. I’m not talking about essential workers such as police, fire, or health care workers, but about the people who could stay at home and don’t. I’m talking about the people who “have” to run out to the store to pick up this or that item, or the people who gather in public places, or the people who let their kids out to play with other kids. The list could go on and on. Are these people that stupid or that selfish? Are they more concerned with their individual freedoms than the common good? Liberty and responsibility are inseparable, yet I see people running out to stockpile supplies (and guns and ammunition) in an every-man-for-himself free-for-all. If we just thought in terms of community, we would all be safer, both from the virus and from the maelstrom of fear, panic and greed that drives neighbor against neighbor.

I didn’t mean for this post to get so serious, but ten days in isolation with too much time to worry leads to these kinds of thoughts. We’ve both been thinking about ways to break out of this rat race that we call the system. There has to be more to life than chasing a bigger paycheck and accumulating goods and increasing the GDP. We both wonder if this crisis isn’t an opportunity for the world to stop and re-evaluate its priorities. Maybe something can be learned from this, but I’m not sure. Speaking for myself, you’d think that I would have learned my lesson after having a near-death experience with Stage IV melanoma, but I didn’t. I went back to work chasing the same old cheese. I fear that the world will also put this tragic crisis behind them without even a lesson learned, chasing the same old cheese.

Stay safe everyone.

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Now, I’m afraid

It’s March 18, 2020 and the U.S. is now in the beginning stages of the COVID-19 global epidemic (or pandemic). For most Americans, the biggest worry is getting toilet paper, but for some the pandemic has already taken their lives or the lives of their loved ones. If it hasn’t gotten real for most other people, it will. I don’t want to go off on a rant about the selfishness and thoughtlessness of many people, or the lack of leadership from our politicians, or the lack of preparedness of our health care system, but it all makes me very angry. Or, to put in “I” terms, I get angry when I think about it.

Lately, I’ve been trying to put things in “I” terms in order to take ownership of my thoughts, emotions and reactions. Events or actions or even words external to me might trigger a thought, emotion or reaction, but I can’t blame the event, action or word for my reaction to it. In other words, if someone does something, say insults me or hoards toilet paper so that I can’t buy any, that doesn’t directly cause a specific reaction in me. My reaction is a choice; how I choose to react is within my control, even if events are not. That distinction is not usually obvious to me in the moment because my amygdala wants to take control in that moment. If I count to three (or one hundred and three) and take a step back, however, I can see what’s being triggered in me. If I can understand my triggers, I have a better chance of acting rationally instead of emotionally. In theory. It’s hard for me to be detached and rational when I perceive a threat to my survival. My amygdala is just doing its job, trying to trigger a “fight or flight” response in order to save its host organism.

That’s where I’m at now. In “fight or flight” mode, only there’s no visible enemy to fight and no truly safe place to run to. I’ll be honest. I’m afraid. I wasn’t this afraid when I was diagnosed with stage IV melanoma and I wasn’t sure if I’d live more than a few months. Yes, I was worried. I went through most, if not all, of the KĂ¼bler-Ross stages of grief, and I worried; but I didn’t have this kind of FEAR then. I figured that I would have access to quality medical care, that if one treatment didn’t work, I could try others, and I eventually accepted that if none of the treatments worked, then maybe it was my time to die, hopefully at home and surrounded by my family.

This COVID-19 threat is different. What I’m reading about happening in Italy shows me that none of those things might be available to me. First of all, because I am 63 years old and have cancer, diabetes and asthma, I’d probably be triaged as being high-risk and therefore, not worth saving when it comes to choosing who gets saved and who is left to die. I don’t feel that I’m high-risk, but maybe I am. Secondly, and this is more serious, most of the people who are dying in Italy, are dying alone. If they end up in the hospital, they are isolated from all visitors, including immediate family members, who themselves may be sick and isolated. There’s no silver lining to this that I can see and I respond emotionally by being afraid. Very afraid.

I’m afraid for myself, but also for the people I love. Lynn and I have a couple of errands to do this week, but after that we are going to be sheltering in place for at least 14 days. Neither of us has a job to go to (Lynn was furloughed, I’m still out of work since my layoff in January) and we have enough and supplies, including medicine, to last at least that long, so there’s no real reason for us to risk catching the virus or, even worse, spreading it to someone else if we do happen to have it ourselves. I pray that Lynn doesn’t get sick with it and we are separated. I just wish that more people would self-isolate. Seeing pictures of spring-breakers frolicking in Florida is another trigger for the old amygdala.

One of the things that worries us is that we may not get to see our kids or other loved ones again. We’re choosing to self-isolate, but what happens if we get sick or one of them gets sick? And we have no idea at this point how long this social distancing will need to last. Lynn just told me that she read that it could last eighteen months. I hope that’s not the case, but who knows. There’s so much that is unknown about this new threat.

I’d like to say that this crisis is putting our other worries into perspective, but for me, the worry and fear is cumulative. I’m still worried about being out of work and not being able to find a job. It was going to be a challenge before this happened, but now nobody is interviewing and, as the economy continues to take a hit from this, more and more people will be out of work. I’m still worried about money, because our income has been reduced drastically and our fall-back savings are being quickly eroded by losses in the stock market, so we may not have those savings available when we need them. Economists are starting to say that we might be heading for a “depression,” instead of just a temporary recession, so that’s another worry. And then there’s COVID-19 itself, which is just beginning to disrupt our lives. I don’t know that we’re equipped to deal with this socially or emotionally as a society. As an individual, I’m just starting to wrap my mind around it.

And now I’m afraid. For all of us.

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