15 Days

Posted on April 3, 2020 by Rich

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

Posted on March 29, 2020 by Rich

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

Posted on March 18, 2020 by Rich

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 Kübler-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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I still don’t have melanoma

Posted on March 8, 2020 by Rich

I was going to title this post “I still don’t have melanoma … or a job,” but I decided to focus here on the positive, at least to start. Health-wise, not much has happened since January. My last scans were clear and I am now on a schedule of having my scans every four months instead of every three. If this keeps up for a year, I’ll go every six month, then after five years, just annual scans. I’m not sure if I’ve mentioned that before. I haven’t posted in almost two months so I may be repeating myself here. If that is so, I apologize.

So, yes, health-wise, I’m doing very well. Lynn gifted me with a fitness-tracker/smart-watch for Christmas, primarily to display the blood glucose readings from my CGM, but the side effect has been that it has encouraged me to be more active. I love side effects that don’t send me to the E.R. I’ve been doing a lot of walking and I feel better than I have in a couple of years. Of course, I have more time for walking now, but I’ll get to that later. The key take-away here is that I feel good physically and that I’m beginning to believe that two of my goals for last year my actually be doable this year.

Last year, as you may recall, I set myself goals to run a 5K and to hike Mt. Monadnock. With the weather getting warmer and my fitness getting stronger, I might actually get out and start training for those two goals. I figure I’ll tackle the mountain first. From what I read, it’s not Mt. Everest, but it does take about 4-5 hours to hike to the summit and back and part of the trail near the top is steep and rocky, so good shoes, food and plenty of water are recommended. From the summit, the view stretches for many miles on a clear day with a panorama that takes in Vermont, New Hampshire and Massachusetts. In the fall, the autumn foliage is in full display but that’s also when the mountain gets the most crowded. Right now I’m thinking May or early June, before it gets too hot. As for the 5K, I want to start training soon, but that also requires good shoes. What was it Thoreau said, “beware of all enterprises that require new clothes“? I don’t know if that also included new shoes.

As you may also recall from my last post, I was laid off from my job in January. I’m still looking, but not having a lot of success. It’s frustrating. Financially and mentally, I’m not ready to retire now. I was planning to work at least until full retirement age, if not slightly beyond and add to the old nest egg. If I don’t find something soon, we may have to start drawing on that nest egg. I’ve been doing what I can to find employment — I’ve increased the distance that I’m willing to commute, I’ve been flexible about the kinds of jobs that I’m applying to and I’ve contacted past coworkers for leads. I’ve been on a couple of interviews, but I wonder if my age is working against me. I had one interviewer ask me pointedly if I thought a person could be over-qualified for a job. I wonder if over-qualified was just code for too old. I also wonder if I would have been asked that question if I was twenty years younger. As someone told me, age discrimination is a thing. You can’t prove it, but it’s real.

I’ve also been spending a lot of time taking online training courses to brush up on old skills and to learn new skills. I’m not sure if that helps any. It’s hard to really learn something unless you actually do it every day, but I figure some of the new stuff is sinking in, and the old stuff is coming back to the fore. I had one interview where I was asked technical questions that I should have remembered the answers to but it’s been so long, I just drew blanks on some of them. I know I could do these jobs but trying to prove you can in an interview isn’t always so easy. I think that a hiring manager looks at a 63 year-old job applicant and thinks, “I don’t have time for this guy to come up to speed. He might not live that long.” And they don’t even know that I’m a diabetic cancer survivor!

I have another phone interview tomorrow. It’s a contract job, temp to perm, so it won’t solve my health insurance needs until if and when I go permanent. In the meantime I’m paying $1200/month for COBRA. I would love to get that monkey off my back, at least until I’m old enough for Medicare, although it will be almost ten years before Lynn would be eligible. Her current job doesn’t offer health insurance, or much else other than flexibility to take time off for my medical appointments. To say that we’re both a little stressed over this situation would be an understatement. We each deal with this stress in our own way.

One thing that we have now to distract us somewhat from that stress (or two things) are two new chickens. You can see one of them here in the photo on Lynn’s arm. That’s Jilly, the hen, and her partner is Jacques. They’re both seramas, the smallest breed of chicken. Jilly is smaller than a pigeon and Jacques is a bit larger. We’re keeping them in the house. Most people keep them as house pets (in cages like parakeets, although seramas, like all chickens, are flightless). Housing is a challenge right now. We currently have them in a guinea pig cage, but we think they might need more room. Jilly is laying soft-shelled eggs, which isn’t good for her or the eggs, which we think might be due to the cramped living quarters. We’ve been looking at rabbit hutches and other small animal enclosures, but we haven’t found anything so far that will fit in the space that we have and be easy to clean and be comfortable quarters for Jilly and Jacques. This has also been frustrating. We’re afraid that if we don’t resolve this soon that Jilly’s health will suffer. We don’t want that because we’ve started to get attached to her. Seramas have great personalities and they’re starting to get attached to us, or at least the treats that we give them.

One of the things that I wanted to talk about is gratitude. With all the stuff that has been going on, it has been hard, for me at least, to remember to practice gratitude. I am extremely grateful for all that I have, but I don’t often show it, talk about it, or write about it. Lynn reminds me about that and she is absolutely correct. I am grateful for everything and everyone. Whenever I get feeling down and my thoughts start going to dark places, I need to remember all that I have, everyone I care for and all those that care for me, as well as all the people I don’t know and have never met who have made my melanoma recovery possible. Thank you!

I think that will be a subject for an upcoming blog post. See you then.

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A bump in the road

Posted on January 20, 2020 by Rich

Last Friday, I experienced what Lynn told me was “a bump in the road.” This particular bump took the form of me getting laid off from my job. I got the call on Friday (I was working from home because I had a service guy coming to the house). In this phone call, they told me it was a company reorganization, a reduction in force, etc, but the upshot is that I am now unemployed. I don’t need to dwell on the details.

My (former) company was not entirely ungenerous, giving me ten weeks severance pay, essentially one week for every year that I worked there. Sadly, they were less generous with the company-subsidized health insurance, which will only cover us until the end of the month. The timing for this could be a little better from my perspective. I have scans scheduled for early February as well as ongoing need for diabetes medicine and supplies. The month of February is probably going to cost me more in health-care costs that my severance check. My brother-in-law had a good suggestion. He suggested that I ask them for ten weeks of insurance coverage in exchange for which I promise not to sue them. I figure that this is a no-lose gambit since I probably don’t have much of a case against them, at least not unless I can prove that they terminated my employment due to my age or medical condition.

Short of finding another job in the next two weeks that offers me medical insurance, my other options are COBRA, and some kind of Obamacare (Access Health Connecticut). I haven’t seen the the COBRA package yet, so I don’t know what that might cost me (I imagine a lot!) and I haven’t explored the Access Health option. I imagine both will cost me significantly more than I was paying through work, but less than paying everything out of pocket. There’s a lot I need to find out in the next few days and some tough decisions to make. Companies like to terminate employees on Fridays. It gives the survivors the weekend to get over the initial shock and then they can come back on Monday ready to be productive. For the casualties, however, it’s extra days to think about things without the ability to make phone calls and gather information. It also doesn’t help that Monday is MLK, Jr. Day. While not a day off for many workplaces, it’s kind of a dead day as many people take the day off anyway. So I wait until Tuesday.

The good news, though, is that I don’t have cancer! I have to remind myself of this when my thoughts start going to dark places and I start to feel sorry for myself. I am very fortunate. About a year and a half ago I didn’t think I was going to live six months. Now, I feel better than I have in years. When I think of all the people who have struggled with melanoma, some of whom are facing really grim realities daily, my little speed bump seems insignificant. I owe it to myself and I owe it to them to keep a positive attitude, because the worst that could happen as a result of this bump is not really the worst that could have happened to me.

As Lynn says, it’s just a bump in the road and we will get through it.

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2020 Vision

Posted on January 14, 2020 by Rich

It has been about two months since my last blog post. Since then, Thanksgiving and Christmas have come and gone and a new year is upon us. Not much to report on the melanoma, or even diabetes, fronts. I have my quarterly scans next month and, if all goes well, my scans after that will be scheduled every four months instead of every three, which will be nice. Management of my diabetes continues to be a challenge, but overall I feel better than I have in two years. I’m feeling very optimistic.

Speaking of Christmas, one of the gifts I received from Lynn is one of those fitness tracker “smart” watches. I wanted it mostly so that I could connect it via my cell phone to my CGM (continous glucose monitor). By doing this, I can now see my current blood glucose reading with a flick of my wrist instead of taking out my phone, and opening the app. Taking out my phone is awkward when I’m in a work meeting and dangerously distracting when I’m driving. I’m happy that I can get that information more easily now. For those that are interested in the technical details, my CGM is a Dexcom G6, and my smart watch is a Fitbit Versa 2 using the Glance watch face. Feel free to drop me a line if you want more info.

Aside from the CGM related benefits, this fitness watch has motivated me to be more active. I had a simpler fitness tracker before but somehow it didn’t motivate me to move the way that this new one does. Perhaps because I am looking at it frequently to check my glucose levels that I’m more aware of it. Anyway, I’ve set basic fitness goals: 10,000 steps, 5 miles walked, 10 floors climbed and 30 minutes of active exercise per day. I’ve done a fairly good job of meeting all of those goals most days. In fact, I thinking of increasing some of those goals. So yeah, I’m feeling pretty fit these days.

I know that I wrote last year that one of my goals for 2019 was to run a 5K. Well, that goal never made it past the thinking about it stage. I haven’t given up, I’m just carrying it over into the new year. I feel confident that I can make this happen in 2020. I already feel like I’m getting my legs under me, and that feels good.

I remember when I was first diagnosed stage IV 18 months ago. I was searching around on the web for any information I could find and I came across a video about a gentlemen who was about my age who had undergone or was undergoing immunotherapy treatment for melanoma. Not entirely coincidentally, the gentleman’s doctor is now my doctor. I tried searching for that video again so that I could post the link here, but I couldn’t find it. Maybe they took it down, I don’t know. What I do know is that video gave me a little hope. It showed the patient looking well, and doing active things such as walking in the woods with his wife. It seemed like such a simple thing at the time, but I wasn’t sure then if I dared to hope for that kind of quality of life while going through whatever treatment I ultimately decided upon. And here I am today, not really thinking about cancer and becoming a fitness geek. Go figure.

As usual, while there are no guarantees about the future, I’m confident that my next scans will be good scans, or “unremarkable” as the radiologists say. I’m looking for forward to a really good year.

And that’s my 2020 vision.

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Another anniversary

Posted on November 6, 2019 by Rich

I haven’t posted here in a while, not since September. I haven’t had much melanoma news to share. I have scans scheduled for this month and am seeing my oncologist to discuss the results. I have no reason to believe that they won’t be good. I feel good, although the diabetes continues to be a challenge. I also have an appointment with a new dermatologist this week, so we’ll see how that goes. I’ll have more to say about that after the appointment.

I actually came here to write about my diabetes. A year ago today I was being admitted to the ICU suffering from diabetic ketoacidosis. I know I have written before about my history with diabetes, how I contracted it as a side effect of my nivolumab treatment, so I won’t rehash the whole story here. My one-year anniversary makes me reflect on how far I’ve come on this journey and how far I still have to go. A year ago today it was touch and go whether I would leave the ICU alive. I didn’t know the full extent at the time, I found this out later. I was kind of out of it at the time, conscious but not clear-headed, so the doctors and nurses shared their concern with Lynn. So, she got to worry while I rested. I never knew what an anion gap was before, but it turns out that it was vitally important that mine close. The staff, and Lynn, were watching those numbers through the night as my anion gap closed ever so slowly. By the next day, I had come through the crisis and was transferred to a room on an oncology floor.

I spent the next four days on the oncology floor even though I was suffering from diabetes. I think that was because I had been admitted from Dana Farber. I was told that I was the healthiest patient in the oncology ward, not that there was much of a competition. There were some very sick people on the floor, some of whom didn’t make it home. While I was there, I got to hear my roommate making end-of-life plans. It turns out that his treatment wasn’t working and his cancer was “exploding.” In a room as small as the one we shared you hear these things through the curtain even if you don’t want to. I was more surprised than anything about getting diabetes. Being on the oncology floor, seeing and hearing everything, it was hard to feel sorry or angry or anything else about getting diabetes. It was only later, after I went home, that I had time to feel those things. Mostly I just wanted to get out of there and go home.

Anyway, the oncology ward was where I was bedded and that’s where the diabetes folks had to go to check up on me. Looking back, I think they were peeved that I inconvenienced them by making them travel to the oncology ward. They certainly weren’t very warm or encouraging. I think that was another reason that I wanted to go home. The longer we were there the more that Lynn and I were getting irritated with them. I learned that I had diabetes, I learned that I would need to take medicine to control it for the rest of my life, I learned how to give myself that medicine, and I even learned the basics of carb-counting and the balanced plate. I just wanted to go home.

And on the fifth day they set me free. I think they would have kept me there longer but it was a Friday and they didn’t want to keep me over the weekend. So home I went with some needles and medicine and an appointment with an endocrinologist in my area. And the rest as they say is history. Well, not past history because I’m still living it.

Take today for example. Today I couldn’t seem to keep my blood sugar up no matter how much I ate. I went to work and before I got to work (I have a long commute) my glucose monitor started beeping so I ate some glucose tabs. Before lunchtime, I beeped again, so I ate some crackers. Then I had lunch and took insulin to cover those carbs and an hour later I was beeping again so I ate some raisins. Then some glucose tabs and then some crackers and then some more glucose tabs. It was the craziest day. When I have days like this, Lynn says that I don’t have diabetes anymore. I wish that were true, but I know that it’s just my diabetes messing with me again. One whole year and I’m no better at this stuff than I was when I left the hospital. I feel like I need to go back to square zero, forget everything I thought I knew and relearn everything again. It’s frustrating.

But, and this I remind myself daily: it beats being on the oncology floor because I belong on the oncology floor.

Happy anniversary.

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Best Present Ever

Posted on September 29, 2019 by Rich

This post is a little late in coming, but I celebrated another birthday this month. So, that’s now two birthdays that I have celebrated since my stage IV melanoma diagnosis last year. I wasn’t sure if I would make it to last year’s birthday, let alone this year’s, but it looks like the treatment is working and that I can look forward to many birthdays to come.

When it came time to blow out the candles on my cake, I wasn’t sure what to wish for. It seemed greedy to ask for anything more than good health and a future, so I thought about resolutions.

My actual birthday cake was much smaller than the one pictured here. It was just big enough for Lynn and me to each have two small slices. I was thinking back to last year when I was getting an infusion at Dana Farber in Boston. It was the day before my birthday and the nurses surprised me with a birthday cake. This was before I had diabetes. I’m not sure that they would have sent me home with birthday cake and sparkling apple cider if I had had diabetes back then. Still, I was extremely touched by their thoughtfulness. That might have been the best tasting birthday cake ever, although I’m sure that the circumstances contributed to my appreciation.

This year’s cake was very good, rich and chocolaty and certainly worth the temporary spike in my glucose levels. I wouldn’t have wanted it to be any bigger. I’m learning that just enough is often the perfect amount. You think you want more, but you don’t really. It’s just a habit to want more when, if you stop and reflect, you have all you need. I’m beginning to sound a bit like Dorothy at the end of The Wizard of Oz, but it’s true. I hesitate to say that I’m satisfied, because that implies that I don’t want to grow or change things in my life, but I am content, if that distinction makes any sense.

Each birthday marks the beginning of a new year, even if the calendar only changes by one day. Instead of making birthday wishes this year, I made birthday resolutions. One small one that I made was to wake up and get out of bed on time. Woody Allen once said “90% of success is just showing up.” I would go that further and state that 99% of success (however you define it) is getting out of bed. Unless you’re Marcel Proust, you’re not going to accomplish much until you get out of bed. Sleep is another one of those things where just enough is enough. You may think you want more, but you don’t really. Good-bye snooze alarm, hello morning! Total disclosure, I still use the snooze alarm because I don’t trust that I won’t fall back to sleep, but my goal each morning is to get out of bed before the second alarm sounds.

There are other things I resolved, but I figured I needed to set the groundwork first. Starting the day at a regular time and not feeling rushed in the morning is part of that groundwork. I read a book where the author advocates getting up at 5 a.m. every day. I’m not yet ready to get up that early, but I can see his point. He advises that if you can think of things you want to do with that extra time in the morning, those things will motivate you to get up and hit the floor running. My plan is to slowly move my wake-up time earlier and earlier, so I will have time for some of those things. For me, that would be exercise, meditation, writing. And that’s what I’m laying the groundwork for now. Baby steps.

I’ve also been working on procrastination, but that’s a topic for a future blog post (see what I did there?)

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More boring good news

Posted on August 21, 2019 by Rich

We got the results of my latest scans this month and the report was as good as could be hoped for. My scans continue to show No Active Disease. My oncologist also said that he has a high level of confidence that I will not have a recurrence of melanoma. He put the odds at 80-90% that the melanoma would not recur. He also said that the longer I go without having a recurrence the higher those percentages go up. They may never reach 100%, but at some point it becomes much more likely that I will die of something else before I ever get melanoma again.

Needless to say we were both ecstatic. We received a similar report after my last scan (without the percentages), but this time it seems more real. I feel like this time I finally have the cancer behind. It’s still in my rear-view mirror, and will always be there, but eventually it will fade to a small speck in the distance. Today, the term “melanoma survivor” doesn’t feel like just a state of mind, a phrase that people with cancer use to not feel like victims but rather, to feel like active participants in their own healing. Today, I feel like it expresses my physical reality.

Tonight, Lynn and I attended Yale’s melanoma support group meeting. There were three of us melanoma survivors, all with no active disease or no evidence of disease, and some have had clean scans for many, many years. I thought to myself that if someone who wasn’t familiar with melanoma had walked into that room and seen us there, they would have concluded that “gee, this melanoma stuff is no big deal. Everybody gets cured!” That’s the danger of small sample sizes. There are hundreds of melanoma patients who go to Yale for treatment or follow-up, yet you can usually count the support group attendees on one hand. The people who do attend regularly are people who are doing well. I wonder where all the other people are. I would think that the people who aren’t doing so well would benefit the most from a support group. I realize that the people who are really battling may be too sick to travel, but there must hundreds of people in between, people who are struggling or scared, people who aren’t getting great scans, but who are for the most part healthy enough to carry on their daily activities. Where are they? I don’t know.

We started this blog for a couple of reasons. One was to keep a journal of our struggle with this disease, the ups and downs, and how it affected us. The other reason was that we wanted to share this in the hope that other people, especially couples, would see this blog and would read things that maybe they could relate to. I hope that we have reached at least one or two people. It’s hard to tell because, while the site stats tell us how many visitors we get each day, it doesn’t tell us who they are and what they might have felt about what they read here. Also, although the site offers visitors a place to leave comments, so far no one has done so. Anyway, I hope that what we have been shared here has been useful or interesting to someone. If all continues to go well, this blog will get less interesting in the future because, let’s face it, good health is as boring as an unremarkable scan.

I’m not sure what I will write about in the future. Melanoma is never going to go away completely. I hope that my immune systems remains strong and ever-vigilant at keeping those melanoma cells in check. I also hope that I continue to be free of symptoms and side effects. Of course, that won’t leave me much to write about on the subject of my melanoma. Would anyone besides us be interested in updates from a boringly healthy melanoma survivor and his wingman?

I’m open to suggestions.

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Zoom, zoom!

Posted on August 12, 2019 by Rich

I wrote in an earlier post about recently fulfilling an almost lifetime dream of owning a two-seat convertible sports car. In its current iteration, this dream manifested itself in a charcoal grey mica Mazda Miata. I’ve had it for almost two month now, but haven’t driven it a lot, relegating it to weekend driving when the weather (and my schedule) was amenable to top-down touring. I told myself that I would only drive it for pleasure, so using it to commute to work or to run errands to Home Depot was out.

Well, today was a day for pleasure driving, but pleasure driving with a purpose. I joined a club of Miata owners, and today they had what is called a “poker run.” It’s kind of a motorized scavenger hunt, where you drive around, following a predetermined route and try to find landmarks, solve puzzles and collect playing cards along the way. At the end of the run, we would meet up at a restaurant for a late lunch and the team with the best poker hand would be awarded a trophy. I was the driver for our team and Lynn was the co-pilot/navigator. We started out strong, but we missed a few turns and had to circle back a bit. I didn’t think it was a lot, but as the day went on it became increasingly clear that we weren’t going to make it to the end-point by the agreed upon gathering time. This caused me a great deal of stress, because I was afraid everyone would be gone by the time we got to the restaurant. One thing I stubbornly refused to do was to call the organizer to tell him we would be late or to ask for directions. If I had, we might have gotten there a few minutes earlier but my sense of accomplishment would have been lessened.

Yes, we were about an hour late, but the good news is that we weren’t the last ones to arrive. As we walked into the restaurant, two last cars pulled into the parking lot behind us. We completed the course, answered all the questions (although I don’t know if we answered them all correctly) and collected all the cards for our poker hand. Alas, three tens did not win the prize. Another team with an ace-high full house took home the trophy. Also, the not-so-great news is that many people had left or were leaving by the time we got there. Insert frowny face here.

To add a little more adventure to our day, my continuous glucose meter decided to go offline about halfway through the run. I had no idea really what my blood glucose level was other than to go by how I felt. I felt good, if stressed, for most of the run and only started to feel low near the end. When we arrived at the restaurant, I made a beeline for the rest room and did a finger-stick to test my glucose level. It was 56, which is pretty low, so I gobbled some glucose tablets and hoped that my meal would arrive quickly. It didn’t, but the glucose tablets tided me over until it did arrive. I hate my diabetes! It’s not so bad when I’m home, as it’s easy to treat it with insulin or food, but when I’m out it’s not so easy to know what my glucose level is all the time, and it’s not always easy to treat my highs or lows. Before we got to the restaurant, Lynn advised me again that I should tell people when my CGM alarm goes off that I’m not getting texts, or stepping out to send texts or make phone calls, but that I have diabetes and I have to deal with these alarms because my blood sugar has a mind of its own sometimes. Luckily, the alarm did not go off in the restaurant, so no explanations were necessary. We met some nice people, had a good meal (we were both starving by this time), and we look forward to future Miata gatherings.

Overall, it was a good day. When I think back about where I was a year ago and how lucky I am to have the health that I currently enjoy, it seems petty to complain about wonky glucose monitors or having to deal with diabetes. Plenty of people have diabetes, just as plenty of people have cancer. There’s no great reason why I am doing better than someone whose cancer is not responding to treatment, so I need to appreciate what I have and not focus on the little frustrations.

Speaking of my health, tomorrow I go in for scans and on Tuesday, I get the results. I have no reason to believe that I won’t get another good report. Lynn asked me again if I was nervous about those scans and I am, but just a little, surprisingly. Just based on how I feel, I should get another good report, but you never know. Melanoma is a sneaky bastard. I’m glad I had today, just in case.

The title of this blog post was inspired by Mazda’s old marketing slogan. The full slogan was “Zoom Zoom, Today, Tomorrow, Forever.”

You better believe it.

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