I still don’t have melanoma

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

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

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

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

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

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!

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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Keeping on the sunny side

This was my breakfast this morning. Actually, part two of my breakfast. My usual breakfast consists of a bowl of plain instant oatmeal (with cinnamon sprinkled in liberally), eight ounces of vegetable juice and two hard-boiled eggs. That’s what I have almost every day. Today, I switched out the hard-boiled eggs for two sunny-side up, courtesy of our hens. These were the first eggs that any of them laid, starting this week. Thanks, Buttercup!

So, I started off the day appreciating a couple of gifts. Yesterday was the one-year anniversary of my diagnosis of stage IV melanoma. I really did not expect to be enjoying a homestead breakfast this morning, or enjoying anything else for that matter. I won’t re-hash all the events and emotions of the last year. I think that they are well covered elsewhere in this blog. I mostly want to discuss my gratitude for being alive and for having pretty good health right now. There’s a a guy in the melanoma support group I attend and he often speaks of his gratitude for being on the “grassy side.” You know, as opposed to being under the grass. If you’re reading this, hi Casey, keep on keeping on the grassy side!

So, sunny side, grassy side, they’re both different words to express being alive, and being filled with joy for being alive. I won’t say it hasn’t been a struggle at times. Diabetes and colitis are no picnic. Surgery and SRS weren’t a lot of fun either. And all the doctor’s visits and treatments and the medical bills are not how I’d prefer to spend my time and my money. The end result, at least so far, is worth all the hassle. I’m alive and I feel pretty good, most of the time, and my outlook is much better than it was a year ago. So, thank you to all the researchers who came up with the treatments that appear to be working for me. Thank you to all the melanoma warriors before me who put their lives on the line battling for a cure. Thank you to all the doctors, nurses and other medical staff without whose expertise I wouldn’t be alive. Finally, and most of all, thank you to my wingman Lynn, without whom I would not have been able to get this far and without whom I would not have had the courage to continue the fight when things looked the darkest.

Things are not perfect. They never are. I don’t know what the future will bring or if I will be celebrating a two-year anniversary this time next year. I’m not going to dwell on that now. For now, I’m going to keep it on the sunny side.

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One Year Later

I wanted to post something on the anniversary of Rich’s stage IV melanoma diagnosis. I’m not sure why. Maybe because I thought it would be good to post something about the changes and things that have happened over the past year but I’ve found this to be quite a difficult thing to write about.

Every time I remember that day, a year ago (when we sat on the couch for hours waiting for a call that ended up changing our lives instantly), I am flooded with memories of hearing the news, the fear, the worry, seeing Rich get so quiet and far away, I could see his face and how hard it was on him and I couldn’t reach him. So many memories that I really don’t wish to remember. Just thinking about it brings back all the emotions that were felt a year ago and I find myself unable to articulate anything that I want to say.

On some level I know I’ve changed. My thinking has changed, the way I see the world and people has changed, life has changed but to write about that means I have to go back to that day one year ago and trying to write something seems impossible. I’ve tried and deleted and it’s getting late, the day is almost over. I’m going to try once more and hopefully I can stay on track this time.

I’m grateful to be writing this post tonight. This blog wasn’t even a thought a year ago but if it had been I wouldn’t have been able to even think about writing a year later. A year away didn’t exist in my mind then. The next day barely existed. Life was spent living day to day and sometimes moment to moment never knowing which end was up. It was a tough time and really hard to explain to anyone who hasn’t lived like that. Since May, when Rich had his last scans showing no active disease, we have been living from that scan to the next. That next scan is coming up on August 12th. Scanxiety is starting but it isn’t terrible at this point. A year ago, I was always terrified so that is an improvement. When Rich has an ache or pain I still get concerned but I don’t worry as much as I did before. A year ago, and in the months that followed, I worried about every single thing. I told myself every ache doesn’t mean it’s the melanoma or a side effect but I still worried always thinking about the “what if’s”. I reached a point where I was relaxing a bit and I’d get scared and worry that something might happen if I started to not worry. Rationally I knew all of the worry was silly but I had trouble believing that rational part of myself.

Today, Rich and I weren’t quietly sitting, in silence, waiting for the phone to ring. There was no call bearing bad news. Our lives didn’t change at all today. It’s exactly the same as it was yesterday and to some that may seem like a pretty boring way to live but for me having a normal day feels wonderful. A year ago I didn’t think that I would ever know normal again. Somehow normal changes when a life changing thing happens to someone you love. I spent months hearing and reading about people finding a “new normal”. For many months I didn’t have a clue what that could possibly mean. At some point between May and now I started to realize I wasn’t hoping for a day to be normal anymore. A day was a day and whatever happened that day was normal. Things have not gone back to how they were before. Melanoma is a shadow but that is ok. As long as it is just a shadow, it allows me time to reflect. I am lucky to be with Rich and I am so grateful that we experienced a plain old normal day together.

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Vacation is over

Note: In my last blog post I promised to talk about things I’ve been doing during my June respite from medical appointments. I hope to get to that in my next post, but first I want to talk about some things that are on my mind as my one-year anniversary of diagnosis approaches.

In a previous blog post, I mentioned how I was about to go on a vacation for the month of June. The vacation I spoke of was not some glamorous adventure or trip to some far-flung destination. Rather, it was a vacation from medical appointments for the entire month of June. For the first time since my diagnosis of stage IV melanoma almost a year ago, I did not have a single medical appointment for an entire calendar month. I thought that was something to celebrate.

Also worth celebrating, I think, is my upcoming one-year anniversary of my stage IV diagnosis. There are many dates that I could mark as my anniversary. I could mark the date years ago when I first noticed a strange looking mole on my elbow and said to myself “I should probably get that looked at.” I could mark the date many years later when I finally did get it looked at (after it ulcerated) and the lab report came back as stage IIb. I could also mark the date when I noticed strange lumps near the original WLE incision and in my armpit, or the date when I went back to my original surgical oncologist and he did a needle biopsy in his office of the lump in my armpit and we all knew then that the black jelly-like substance he was drawing out was more melanoma.

No, the date I’m going to mark is the day Lynn and I got the phone call from the surgical oncologist giving us the radiologist’s report from my brain MRI and chest/abdomen/pelvis CT scan. It seemed like we waited by the phone all day and it was almost 7 o’clock on a Friday evening when we got the call. I can imagine that the doctor was dreading giving us the news as much as we were dreading getting it. As, I said we knew in the office that the melanoma had spread to the lymph nodes, so I was at least stage III. We were hoping against hope that that’s all it was, but we weren’t so lucky. The scans showed masses or lesions or whatever you want to call them in my lung, liver and in my brain. I felt like I got a giant kick in the gut. We thanked the doctor for working late and calling (it would have been hell to have to wait the whole weekend to get the results). We then waited for it all to sink in.

I won’t speak for Lynn, but I kind of shut down. I spent about three weeks in a zombie-like state, feeling like I was a dead man walking. We still had a lot of work to do, appointments to set up with various oncologists and cancer centers, and decisions to be made about where and what kind of treatment plan we were going to pursue, but outside of that, daily life became like living in a bad dream. I remember walking into Walmart and I saw the people there and I thought to myself, “these are the living, these people get to live and to do and to make plans for the future. I’m not a part of that world any more.” I was in a pretty dark place.

What they (the health care professionals we sought opinions from during this period) told us was that, once we decided on a treatment plan, and started on it, things would become more normal again, as we would begin to feel that we had more control over the situation. Frankly, I thought at the time, that they were full of shit, but it turns out they were mostly right. I did begin to feel like I had some control and the doctors we spoke with were encouraging, telling us that there multiple treatments we could try and that if one didn’t work, we could try others. And, gradually, things did go back to normal.

Normal. Normal is a double-edged sword. While on the one hand, I mentally joined the living again and was able to get back to my daily routine with work and life sandwiched in between scans and treatments and doctor visits; on the other hand, what’s normal about having cancer?

After I rejoined the living, I promised myself that this would be a wake-up call. That I wouldn’t continue to take life for granted, and especially, I wouldn’t take the people in my life for granted. I would be a better version of my old self. So what happened? At first I made some half-hearted attempts to improve. I reached out to family members and reconnected with my church. And I tried, in the words of Warren Zevon, to “enjoy every sandwich.”

But then, gravity, or whatever invisible force that pulls us back to our old ways and old habits set in. I slowly found myself becoming the same Walmart shopper I was before diagnosis. There’s no real excuse for it, I know better. I know now that there’s no kidding myself. Even if I’ve beaten this melanoma thing, every day is more precious than ever and to waste a single one is a crime against my own healing. Why should I get extra months or years if I’m just going to piss them away like I did almost all of the previous months and days?

And I don’t have an answer for that. I’m not special. I’m just lucky and I apologize to the Universe and to all the people in my life for not embracing the gift of life that I have been given. I will continue strive to improve, to be that better version of myself that I promised myself to be a year ago. I don’t want to go back to Zombie-land.

So, I guess my vacation was also a two-edged sword. While it was nice to not have doctors’ appointments and to pretend that I am basically a healthy person, maybe I needed the presence of hospitals, and doctors, and expensive machinery to remind myself that I am on a journey, a journey of healing and also a journey of growth and reconnection. There’s no vacation from that.

I have a couple of doctor’s appointments this month, one with my urologist, which I’ve had. The report on that front is that nothing in that department needs treatment urgently and I should only see him for annual checkups. The other appointment is a regular, quarterly visit with my endocrinologist to check on the state of my diabetes management and to check my thyroid levels. Nothing major there. Next month, I get scans again to see how my old friend melanoma is doing. It’s too early to get worried about that yet, but I’m sure that I’ll get scanxiety as the date gets closer.

In the meantime, I plan to enjoy every sandwich in whatever form those real and figurative sandwiches take.

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