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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Kicking my “Bucket List”, part two.

Since my last post, Kicking my “Bucket List,” I remembered another reason why I’m not a big fan of bucket lists. I had meant to include it in that post, but I forgot, so think of this post as an addendum to that post.

People don’t always do what you expect them to do. In popular culture, in movies like “The Bucket List,” characters with supposedly terminal illnesses are expected to break outside of their normal lives and daily routines to live the life they’ve always wanted to live or to do the things they’ve always wanted to do. The specter of their imminent deaths is enough, presumably, to spur them to rethink their values, alter their personalities and embrace a grab-all-the-pleasure-excitement-adventure-etc while you can mindset. Good-bye boring old life and hello ashrams and sky-diving!

That’s the Hollywood perception. In real life, people with supposedly terminal illnesses just want to hang on a little bit longer to their old lives, boring and uneventful as they might be. They are changed, no doubt about it, but the changes are often more subtle. Instead of blowing through their life savings on whirlwind adventures, or leaving their friends and families behind while they “find themselves,” they just might become more introspective, re-evaluating their priorities, and asking the big questions like “why am I here?” They may reconnect with their spiritual beliefs and with friends and family. It’s important work, but it’s not the kind of stuff that makes blockbuster movies.

The other reason that real life doesn’t follow the Hollywood narrative is that in real life, people with supposedly terminal illnesses are often quite sick. They simply don’t have the strength to do those things. They might also be in a great deal of pain and they might be dependent on medical care. Also, they might be too broke because, in real life, serious illness can get seriously expensive. That’s the reality for most people. Who has time for sky-diving even if they wanted to, which mostly, they don’t.

You may have noticed by now that I have made multiple references to “supposedly terminal illnesses.” This is because, in my own case, I have stopped thinking of my cancer diagnosis as a guaranteed death sentence. The melanoma might kill me, or it might not. Right now, I’m in pretty good shape, I feel good and my last scans were beyond encouraging, as they showed No Active Disease. This doesn’t mean that I feel that I’m completely out of the woods. Melanoma may always be like a sleeper cell terrorist group hiding in my body, just waiting to strike when my defenses are weak. I’m always on the lookout for some ominous signs of recurrence, so it’s never completely out of my mind, but I try not to let it take over my life, which is mostly pretty normal these days. I’m not one of those really sick sick people, and for that I am grateful.

I hope that no one with cancer or any serious, life-threatening illness has to think of their diagnosis as a guaranteed death sentence. I know that I am fortunate to have the good health that I have. In spite of the specter of melanoma and the constant presence of diabetes, my life is good. I would like for everyone to have hope and to have that most precious of all commodities, a little more time to live their old lives, on their own terms.

Next post: What I have been up to lately with the gift of time that has been given to me.

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Kicking my “Bucket List”

Way back when, back when I was diagnosed as Stage IV, back in the once-upon-a-time of the summer of 2018, some people suggested that I might want to spend my remaining time checking off items from my bucket list. I didn’t take these suggestions well at the time because: 1. I always thought the concept of having a bucket list rather morbid, like a scavenger hunt against the grim reaper, and 2. what difference would it make anyway, what difference would achieving a few earthly desires make when faced with the gaping maw of eternity?

Sure, there are things that I’ve wanted to do or to see. I’ve wanted to travel more, both to Europe and to other parts of this country, and to learn things or accomplish things that I have not learned or accomplished yet. I might still see, or learn, or do some of those things, but it won’t leave an ache in my heart if I don’t. The way I look at it is, if I’ve reached 62 years of age and have not accomplished them by now, then they weren’t really that much of a priority for me. I don’t feel that I’ve sacrificed anything along the way, at least nothing critically important. As I look back, my life experiences up until now may not have been remarkable, but they have been fulfilling.

I remember seeing the movie The Bucket List starring Jack Nicholson and Morgan Freeman when it came out. This movie did not invent the term bucket list, but it did popularize it. I remember watching it at the time and thinking, “well, that’s all fine for rich guys who can afford such shenanigans, but what about the rest of us working stiffs?” Are our lives less complete because we never traveled to the Himalayas? I’d like to think not. What was really important, I think, in that movie was not the things they did, but the relationships they formed or repaired with their families and with each other in the time that they had.

To me, that’s more important than some trivial list of personal achievements. While thinking about this topic, I came across a great article. I won’t attempt to repeat its advice, it’s a short article and worth a read: https://www.asaging.org/blog/kicking-bucket-list-mentality. The article is about retirees and aging seniors, but it can apply to anyone who has become all too aware of their own mortality.

Their predicament in no way dismisses the importance and joy that bucket list events can offer. But focusing too much on such events can quickly become part of a larger attitude that puts one’s own gratification over the possibilities of a life more deeply engaged with family and community. It is aging with a bang versus aging with a purpose.

Marc E. Agronin

The author goes on to suggest that these people infuse their goals with meaning by doing things that connect to others or to their community and allow them to grow. I have to remind myself that these are the things that are really important.

Having said all this, let me tell you about my bucket list. Well, it’s not really a bucket list, but it’s some things I’d like to accomplish this year. One of them came much closer to reality today.

Ever since I was young man, I’ve longed to own a two-seater convertible roadster. I don’t know if it was Tod and Buz from Route 66 or Dustin Hoffman in The Graduate who inspired me, but the idea of hitting the open road with the wind in my hair and the open sky above me was always appealing, When I received the good news of my most recent scans, I told Lynn that I was going to do it, I was going to get that two-seat convertible roadster. To my surprise, she not only supported me, but encouraged me and even went so far as to drive me to the car dealer today to close the deal. So, I guess this is a bucket list item, but it would have no value to me without Lynn. My plan is that at least one weekend day a week for the rest of the summer, we will pick a spot to visit and drive there. We could do that in our current cars, but we probably wouldn’t. The new car gives us a not just a means, but a motive to enjoy this time together. We’ll work out later which one of us is Tod and which one Buz.

The other two prosaic goals have more to do with challenging myself. I’m not sure that I will be able to accomplish either one, but I’m putting them in writing here so that maybe that will goad me into actually accomplishing them. I have never run so much a mile before, but with my health getting stronger, I want to push myself to run a 5K before the year is out. I’m setting a target to do this by Columbus Day. I figure that the weather won’t be too hot or too cold by then. I’d like to run it in a respectable time for a 62 year-old couch potato, but if I have to run/walk it I’ll do that. Right now, I get winded running to the mailbox, so I need to start training.

Finally, I’d like to walk in the footsteps of Thoreau and Emerson and hike Mt. Monadnock in New Hampshire. There’s no deeper meaning to this than that. It’s one of the most climbed mountains in the world, and it’s right here in New England. The total time to climb to the top, enjoy the view, and climb back down is about 5 or 6 hours. Not an easy walk in the park, but doable with preparation. I’m hoping to be able to post pictures of the panoramic views from the summit.

The other things I want to do probably wouldn’t make good bucket list items. Mostly, I just want to remember daily to appreciate the gift of life that I’ve been given and to appreciate the people that I get to share it with. It’s so easy to lose sight of those things, especially if you have your head stuck in a bucket.

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Another Side of Rich

It’s been almost a month since Rich had his pet scan and was told that they didn’t see any active melanoma. His diabetes is still a major challenge and he’s frequently frustrated with that but he’s feeling pretty good.

I am starting to feel more like my old self and find that I’m looking forward to things again. I can’t even express how good that feels but I’ll save that for another post.

Having cancer really does change people. I’m seeing another side of Rich that I’ve never seen before. He’s always been someone who would help anyone who asked but it’s always been rare for him to just jump in somewhere and offer his thoughts on something they may be going through. I have learned so many things about Rich since he was diagnosed.

When he was diagnosed he joined a forum for help. He didn’t know anything and has asked questions along the way. I didn’t join the forum but I regularly read the posts and I highly recommend it. The people are amazing and have a wealth of knowledge, they are caring, and they are always willing to share. Here is the direct link to the patient forum since it can be a little hard to find on the site.

https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma-patients-information-page

Once Rich started treatment and had personal experience of his own to share he began to respond to other people who posted on this forum in hopes of maybe helping someone else.

He donated a stool sample to “poop for a cause” so research can be done on how gut bacteria can affect different treatment and cancer related things. I saw that big box delivered to the doorstep and when I asked Rich what it was I smiled inside though I told Rich that I didn’t want to know anything about how he had to go about sending the sample back.

When we first went to Yale the doctor asked if he would mind donating blood. He explained that there was a doctor there that was doing research on people who developed type 1 diabetes from treatment. Rich jumped at the chance and let them take several vials or blood for research.

Recently, Rich was interviewed by someone who was planning to write an article about how immunotherapy can cause diabetes in a very small number of people (less than 1%). Rich agreed to the interview for two reasons. One he wanted to share his story so that anyone else who gets diabetes as a side effect from immunotherapy would know they aren’t alone. He struggles so much. He has type 1 diabetes but it seems harder to manage than regular type 1 and his doctors aren’t as familiar with it. Two, the research they are doing is to try to figure out which patients may get diabetes from the immunotherapy before they go on it. In Rich’s case he probably would have made the same decision but for some people they may choose differently. The risk could be just too high for them. Both doctors and patients would also be more aware If a patient calls saying that they are urinating frequently or that they are extremely thirsty the doctor should see that as a red flag. With side effects, everyone is aware but with so few people getting diabetes sometimes it’s overlooked until a person’s glucose level goes sky high and they end up admitted to the ICU. The research may also help others with type 1 diabetes that didn’t develop it from immunotherapy. Many of these people are children. Not long after Rich got diagnosed with diabetes we were talking about children having it. Both of us agreed that a parent of a child with type 1 diabetes must never want to let their children out of their sight for fear of their child’s sugar dropping too low and them going into a coma. When Rich read the article he liked it and said how he hopes that it helps someone.

Having melanoma has changed him and I don’t know if he realizes it himself. He is giving back a part of himself to others and I believe that is one of the best things a person can do. He’s experienced a terrible disease and dealt with side effects from the treatment. By sharing it with others he is taking an awful experience and is using it for something good.

He wanted to do this blog and he posts frequently. I’ve read what he’s written and I am always amazed at how much he is putting himself out there. I’m the babbler of the two of us. I’ll share almost anything but before Rich was diagnosed I couldn’t have imagined him sharing the way he has here.

Lastly, we go to a melanoma support group at Yale. It’s wonderful. We drive almost an hour and a half to go to it because it is a great group of people. We feel understood when we go and people there share their stories and many are very inspiring. Everyone is always willing to listen and offer support. (That might sound like a no brainer but this group goes above and beyond in offering support). People share things they are doing just for fun too. In the past, I’ve done many things within a group with Rich and he’s usually pretty quiet. In these meetings, Rich opens up and shares every time we go.

While all of this may seem minor, to me it isn’t. I’ve watched Rich go from a quiet and reserved man to someone who is sharing deeply with others who are going through this. Melanoma is nasty, diabetes takes its toll on him, and the worries he has had and is facing are not easy but through all of this he has become a person who wants to jump in and help when he can so that someone feels cared about or could possibly be helped down the road.

Seeing Rich step out of his comfort zone and so willingly reach out has been wonderful. He truly is an amazing man.

For the record, I love seeing boxes on the doorstep, especially if I don’t know what’s in them, but if any more big black boxes show up on our doorstep I’ve vowed to not ask what they are for. Last week another smaller package turned up on our doorstep. When I saw a doctor’s name on the return address I figured it was best to just let Rich open it and not ask too many questions. I didn’t know if he was planning to send some other body fluid through the mail or what. (I’m happy he is eager to help and fully support it but I am glad that I’m not a mail carrier having to deliver those black boxes back). The recent package was a T-shirt which I’m sure Rich will proudly wear to help spread the word. After all, it’s a great conversation starter.

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In the news

I was contacted recently by a science journalist who was doing a story on new research that is being funded to study the incidence of type 1 diabetes as a side effect of checkpoint inhibitors (immunotherapy drugs such as Opdivo). He wanted to interview me because I was one of the lucky 0.9 per cent who got T1D as a result of treatment. We set up a time for the phone interview and we had a nice chat about my history. I wasn’t sure I had anything useful to tell him because it seemed that I was rambling. Actually, I was surprised that I wasn’t more clear when it came to the timeline of events. A lot has happened in the last nine months and it’s hard to keep everything straight. Luckily, I have written a record of it, as well as the records from the hospitals for all my stays, visits, treatments, scans and lab tests so I don’t have to rely totally on my often foggy memory.

Well, as I said, I didn’t think much of it when I got off the phone, but I was soon contacted by the website’s photo editor asking for pictures of me taken during the period I was under treatment. Then I figured maybe something was going to come of it, since they were asking for pictures. In a few days I was contacted by the writer and told when to expect my story to be published on the website. And yesterday it was published and I was surprised to see my smiling mug at the top of the story. It wasn’t all about me, but it led off with me, in that way that news stories are often written, putting a human face on an otherwise dry, technical story. The meat of the story was about the research, I just happened to be the bread that the meat was sandwiched between.

Which is all good. I don’t want to be the poster child for immunotherapy induced diabetes, but if someone else who also has contracted diabetes as a side effect of immunotherapy does a google search and finds that article, they’ll know they are not alone. Seriously, when I first got diabetes I wasn’t so sure. I knew the numbers, that 0.9 percent of patients in the trials got diabetes as a result of treatment, but those numbers were just statistics. Until you can actually put a name or a face on it, it isn’t real. I still haven’t personally met anyone else who got diabetes through treatment, but I have heard from a couple of people in some of the forums, which helps. I hope my story helps someone else.

This is the link to the story. I don’t know how long the website will keep this story online.

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My upcoming June vacation

Last Friday, I had my annual eye exam with my ophthalmologist. The results were that my vision hasn’t changed much since my last exam (I don’t need a new prescription), my cataracts are about the same (I should think about cataract surgery, but it’s not yet critical), and, while the vision in my left eye is pretty weak, I’m not legally blind, so I can continue to drive. I made my next appointment with him for this time next year.

Another day, another doctor’s visit, it seems like. Except, not next month. Looking at my calendar, I see that I don’t have a single doctor’s visit scheduled for the month of June. This is pretty amazing because it has been at least a year since I had a month without seeing a doctor. Going back as far as June of 2018 when I saw my primary and he referred me to someone to look at the lumps in my left arm, which led to a biopsy, scans and surgery in July, and treatment in August, it has been a full dance card of medical appointments, including immunotherapy, a trip to the ICU with DKA, then colitis, etc. If you’ve been reading this blog, you know the whole history, or at least enough of it to appreciate what a lovely vacation the month of June is going to be for me.

I’m not sure how I’m going to spend my June vacation. Going to work and getting caught up on my PTO balance, for one. Enjoying the summer for another. There are some things I want to get started, but those are topics for another post. Most importantly, I want to spend time with and enjoy my family. I can’t remember if I’ve shared this before, but we’ve recently welcomed three more members into our family. Back when I was dealing with colitis, we re-homed the six baby chicks because we weren’t sure that we would have the time or energy to care for them. Since the future, or at least the summer, is looking rosier, we have taken back three of the original six chicks. Turns out that the woman we gave them to soon discovered that six rapidly growing chicks was more than she could handle. Anyway, welcome back to Buttercup, Dumpling and Pop Tart. I seem to recall in an earlier post promising more cute chick pics. Well, here they are, but those cute chicks aren’t babies anymore.

Dumpling, Pop Tart and Buttercup enjoying the sun
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