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: 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.

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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From Limbo to Light

Oh my gosh, I cannot believe what a difference a day makes. Rich had his scans last Monday and on Tuesday we found out that he doesn’t have any active cancer. The last thing that the doctor said was “have a great summer.”

I hadn’t even been thinking about the summer. Getting through one day at a time was the only thing that I could think about. The idea of a whole summer ahead never crossed my mind. I know that in life we only know for sure that someone will be in our life for that minute. Anything can happen at any time to anyone. Somehow even though we know this we still spend our lives believing we have plenty of time. That all changes when you find out someone you love has stage 4 melanoma. It becomes even more apparent how short time is and how important every minute is. The odd thing is it’s no easy task to actually live loving each of those moments when there are side effects and worry about the cancer hanging over you. It’s like a shade gets pulled down and even though you keep trying to let the light in you find that you are just fumbling in the dark hoping for the shade to go up again.

When Rich was diagnosed our life changed on a dime. We didn’t talk about the future any more. Plans and dreams we had seemed to just vanish. We didn’t talk about not having a future either. It was just not there. Our lives were spent researching melanoma and worrying about that as well as possible side effects. We would go out and do things together but it just couldn’t be like it was before he was diagnosed.

When we got the news I was flooded with emotions. It was like someone hit the reset button though I soon learned that we will never go back to the way things were before. Though I wish we could go back and just erase the past 9 months in some ways it is actually a good thing we can’t go back. We have learned a lot. We have learned about relationships. We’ve learned who sticks around through the tough times and who doesn’t. There have been reconnections and disconnections. That’s how life is. More than anything else we have learned what it’s like to feel like we have a second chance. We have changed and in many ways we have grown.

We left the doctors office talking about things we wanted to do this summer. It was wonderful to sit through dinner together and talk about something beyond tomorrow. I have missed that so much and didn’t even realize how much. The worry isn’t gone. We know about melanoma but something changed where I feel calmer. The stress of Rich’s health does remain but it’s not so overwhelming. I feel stronger. Whenever a thought about what could happen creeps in I have been able to shove it out instantly and think about the future. That “good summer” the doctor mentioned. It isn’t that I’ve been in a negative mood or a positive one for that matter. I was in this nothing zone where I couldn’t see anything too far ahead. It was too scary to get too excited about anything ahead because I didn’t have a clue what tomorrow would bring. I’ve felt like a hamster in a wheel spinning around and around. Not being able to fully enjoy anything completely. When we first heard the news I was really happy but there was some other emotion that was disturbing. Along with the happiness I was still afraid. Afraid of the “what if’s” and I was afraid to get too excited. I didn’t want to feel too good. It’s been so long. It was strange and I didn’t like that feeling. I had been wound up so tightly and unwinding didn’t happen all at once and that bothered me. Gradually the reality of the news set in fully. It was actually real and not just a dream. I started to feel that calmness that I haven’t felt in so long. I see all of this in retrospect and it’s taken me almost a week to sort it all out so that I could post about the great news. Now I want nothing more than to enjoy every second. I can actually look ahead and see the future. This is no small thing. Once the future goes dark it’s tough. Even though I’ve never let go of hope that Rich would be ok it felt like our lives were just in limbo and we didn’t see a way out. We couldn’t go back to normal and we couldn’t find an acceptable new normal. Now I feel like we can find that new normal. One where our lives have been altered drastically but where we have learned to appreciate so much more than we could have before.

Rich has always dreamed of having a Miata. I really want him to go get one now. Enjoy it, experience it, have some fun. Summer is coming so why not get one this summer. Drive around with the top down. I used to think it was a bit impractical to have a car like that but I don’t feel like that any more. Why wait? If it’s something he’s always dreamed of having and it’s possible to get it he should go for it. Now, not someday. Someday we haven’t thought about in nine months.

We may begin this chapter seeing the future from scan to scan. As time goes on that will change too. Maybe the day will come when we don’t think about when the next scan is but for now “have a nice summer” feels like a lifetime ahead.

So many people have suggested we take a long vacation. I understand that. It’s a great way to celebrate such great news. Rich and I do hope to get away for a weekend this summer. One thing that is hard to explain is that since the news I have felt like I’m already on vacation. A vacation from that limbo. It’s like stepping out into the bright sunshine and soaking in every minute. It’s an incredible feeling.

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Good news travels slow

I had my scans on May 6th and learned the results on May 7th. The results were quite good, almost as good as we could have hoped for. The MRI scan on my brain showed nothing new, only some necrosis around the site of my radiation surgery back in September of last year. The neck-to-toe PET scan show only some intense uptake around my L4, which I’ll explain because it makes an interesting story.

We were waiting in the doctor’s office, and waiting a little bit longer than usual. We were both getting more anxious the more time went by. I wasn’t really very nervous up until then. I was relieved to have the drama of getting the PET scan over with, what with the stress of worrying if the insurance would approve it and also the stress of trying to keep my blood sugar in range without food or insulin. So I was feeling pretty calm the day of the visit, ready to accept the results and deal with them, however they turned out. After waiting a while, the doctor finally comes into the office with a strained expression on his face and, of course, we both started thinking the worst. Then, he starts off by asking if I had any pain in my lower back and I told him that, yes, I slipped and fell on my butt about a week earlier and I still had some pain there from the fall. His expression turned to relief and then he told us about the intense uptake which the radiologist noted could be a compression fracture or osteoporosis. Osteoporosis is not uncommon in people my age, but compression fractures could be the result of bone metastasis. Or a fall. My doctor said that the results were more consistent with a compression fracture and since my pain was getting better, not worse, it was probably from the fall. Whew!

The rest of the scans were unremarkable (always a great word to hear when your’re getting scanned for cancer). Diagnosis: No Active Disease. Doctor said that he only wanted to see me in three months for more scans and he told us to have a great summer. So yeah, very excellent news. We both left there in great spirits.

No Active Disease. This means that, while I’m not cancer-free, the shadows on my previous scans are not active tumors. This isn’t quite as good as No Evidence of Disease (or NED), which means there are no shadows that could be tumors, but it’s the next best thing and certainly something to celebrate. While there’s no such thing as a cure when it comes to melanoma, not having active cancer means that my chances are pretty good. It’s not a pardon, but it’s definitely a reprieve. I said to Lynn, “we’re playing with house money now, so let’s enjoy the hell out of life!”

That’s what I said. The truth is that I think I had a hard time accepting the news, or at least adjusting to it. It’s hard to explain, but I went into a kind of funk over the next few days. Little things upset me more than they should have. By Friday, I was very brittle. I had some issues with FedEx, a package pickup and a package delivery that coincidentally happened on the same day involving two divisions of FedEx: Fedex Express and FedEx Ground. In both cases there were issues that required to me to make multiple calls to various customer service lines. As I said, they were little things, but I was very edgy and it didn’t take much to ruin my day.

What’s up with that? A guy finds out his cancer is totally inactive and he goes into a funk? I don’t know. I think it took a while for the good news to travel to the emotional part of my brain. Intellectually, I knew it was great news but, emotionally, I think it took a while for it to sink in. It’s still sinking in. That’s what I mean about good news traveling slow. I have to learn how to live life without active cancer. I have cancer, but it might not kill me, at least not in the near future. Beyond that, nobody knows. I never knew. There was always a chance I could get cancer or some other dreadful disease just as there is always that chance for anyone. I didn’t live my life then as the guy who could possibly get cancer someday, and there’s no reason I should live my life now as the guy whose cancer might someday return. True, it will always be in the back of my mind, but I shouldn’t let it rule my thoughts or run my life. And I have to remind myself of that daily until it stays in the back of my mind. I’ve given cancer too much of my time and energy already and now I’ve got some catching up to do.

In other news, the chickens have returned (well, some of them). More on that, with pictures, in another post.

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Playing my hand

The adventure of yesterday’s PET scan is behind us. It was a wild ride but I was able to have the scan and the MRI yesterday. I was more nervous worrying that the scan might have to be postponed than I am today about the results. I figure the cards have been dealt, and I’ll just have to play it out, even if it’s not all aces.

Later today, I find out the results of yesterday’s PET and MRI scans. This will determine whether my treatment is succeeding or failing or just holding steady. As I said, while I am certainly concerned about the results, I was much more stressed yesterday worrying that I might not have the PET scan because my glucose levels were out of range. It was really touch and go for a while and a cliff-hanger right up until the very last minutes before the scan, but in the end, I was able to have both scans. So, that worrying is behind me.

It might seem funny that I was more worried about having the scans than the results of the scans, especially since the stakes are so high. If the scans show that the treatment is still working, hurray! If the scans show that the treatment is not working and the cancer is progressing, I don’t really have a plan B as far as further treatment goes. A lot is riding on these results, so you think I would be more worried than I am, right?

I always go back to this old psychology experiment I read about once. This was back in the day when researchers were allowed to do cruel things to monkeys in the name of science. These days, they do their experimenting on humans, but that’s a topic for another post.

In this particular experiment, two monkeys were both subjected to electrical shocks at random intervals. A few seconds before each shock was administered, a light would flash, so the monkeys would know that another shock was coming. One monkey, the test monkey, had a lever that, if he pressed it between the time the light flashed and the shock was administered, would prevent the shock some of the time, but not all of the time. The other monkey, the control monkey, had a similar lever but it didn’t do anything. He got the shock every time, regardless. Interestingly, the monkey who had some power over the outcome eventually died from the stress. The powerless monkey, who had no choice but to accept that the shock was coming, survived.

I’ve never considered myself a fatalist, but between now and the time I hear the results, I am the powerless monkey.

Say a serenity prayer for me.

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Bad attitude

You’ve been warned

OK, let me get this out of the way now. I am currently tired of people who tell me to have a positive attitude. Fuck that. I’m tired, and frustrated, and sick. Don’t tell me to have a positive attitude. Don’t tell me what to feel or what to think. I know you mean well and all, but you’re just pissing me off. I’ve earned my bad attitude and I’m going to wave it like a flag if I want to. And that goes for anyone with cancer, or any serious illness, or any other pain-in-the-ass life circumstance. Back the fuck up with your positive attitude and let us feel what we feel and get angry or moody or pissy or sad or whatever it is we happen to be feeling in the moment. Where do you get off telling us not to feel that? Offer an ear, or a shoulder, or words of support. That is what we need from you. We do not need an emotion coach. Our emotions are the only thing keeping us sane and if we aren’t allowed to feel them we will go crazy. Seriously crazy. I apologize if our emotions make you feel uncomfortable just as I’m sorry that our cancer makes many people uncomfortable, but we did not choose this. I apologize if our bad attitudes are not socially acceptable, but learn to deal with them if you truly want to “be there” for us. Bad attitudes are just another symptom or side effect like fatigue or diarrhea. We may not have it all the time but when we do, please don’t tell us to ignore it or push it aside. There’s no way around it but through it. Deal with it. We sure as hell have to.

Here’s the other thing. When you tell someone to keep a positive attitude, it’s a little bit like blaming the victim. I’m sure that never occurred to you, but when you tell me to keep a positive attitude, I’m thinking “Christ, another thing that I’ve failed at.” Well, not today. My bad attitude and I are doing just fine today, thank you very much. Tomorrow I might be all rainbows and sunshine but today this is how I feel and that’s OK. OK?

Let me tell you about my week. I spent another week dealing with the four horseman of my insurance coverage: Cigna, CVS Caremark, CareCentrix and US Med Supply. I swear to god that I’ve spent more time on the phone dealing with these companies than I spent in my previous forty years as an insured adult. Much more. On Saturday, I finally received the supplies for my CGM which allows me to get accurate and continuous readings of my blood glucose levels. In the meantime, I ran down my supplies of glucose test strips and have still not gotten the refill to go through. I’m sure that there is more paperwork someone needs to fill out for one of the aforementioned horsemen, which means a few more phone calls next week. Even though I have my CGM supplies, I still need to have test strips for those times that I need to verify my sensor reading or for those times that my sensor is off or offline.

Also, this week I finally got pre-approval for my PET scan on Monday. I was really anxious about this because I know that insurance companies don’t like paying for PET scans because of the high costs. Cigna originally denied it and then my doctor had to schedule a peer-to-peer meeting as part of the appeal process. I didn’t hear much more from my doctor’s office than that they were going to schedule the peer-to-peer last week. I contacted them several times and got the same answer. I didn’t call for a few days figuring that they would let me know if the status had changed, but finally I contacted them on Thursday. They told me that it had been approved, but they only contact patients if the procedure was NOT approved. Sheesh. I called the insurance company to verify and got the authorization code for the procedure so I know that the PET scan is truly on for Monday. At this point, I don’t trust anybody.

Lastly (I think), I got in to see a urologist on Friday regarding my urinary issues. To recap, I’ve got an enlarged prostate which is making it difficult for me to fully empty my bladder and which causes me to go to the bathroom frequently. This is especially annoying at night as I need to go to the toilet 3-5 times per night. I can’t remember the last time I slept through the night. The urologist didn’t see anything wrong other than my big prostate and he prescribed Flomax. I filled the prescription but I haven’t taken it yet because I’ve read that it can cause elevated glucose levels and I need to keep those levels in control for my PET scan on Monday.

Yeah, that PET scan. This is the big one. That and the MRI on my brain that I’m having the same day. My last two MRI and CT scans have been stable, meaning that there have been no new metastases and no growth to the existing lesions. Now the PET scan will tell if the existing lesions are active tumors. They do this by injecting me with glucose and the areas with active tumors will “light up” on the scan as the tumors feed on the sugars. Under normal circumstances, I would be extremely anxious about these scans because this will tell if my treatment is still working. I hope so because I’ve been kicked off the immunotherapy treatment due to my recent bout of colitis. As I’ve stated before, I don’t really have a plan B if the scans show active disease.

And that’s under normal circumstances. Nothing is normal about melanoma. Because PET scans are based on the uptake of glucose in the blood, it is important that my blood sugar is not too elevated going in to the test. I’m not allow to eat anything or have any insulin for six hours before the procedure and my blood glucose level needs to be below 220 just prior to the procedure. If it higher than that, the test will need to be rescheduled. If my glucose drops too low in those six hours, I will need to treat it with food, and the test will also need to be rescheduled. No pressure, right? The only advice I have is to eat a high protein, ultra low-carb diet prior for 24 hours prior to the test. So far today I’ve consumed a four egg omelet with cheese, four ounces of vegetable juice and a Muscle Milk protein shake for a total net carb count of about six carbs. I’m concerned because my glucose level this morning had crept up to 229 before I treated it with insulin. If it does the same tomorrow morning, I won’t be able to treat it. I’m currently at 123 and holding steady. Knock on wood.

Getting back to my attitude for a minute. I’m really trying to keep a positive attitude, especially when it comes to tomorrow. I do believe that thoughts matter, but so do emotions. They are both part of my reality now. I hope I haven’t offended anyone with my rant. I just needed to get this off my chest.

I truly hope that this old saying is true:

The people who matter don’t mind, and the people who mind don’t matter.

Good luck to us all.

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A fall goeth before my pride

This week started with a fall. I was carrying some things into my shed last weekend. On the third and final trip, I slipped on the ramp coming out of the shed and fell hard on my butt. It’s my own fault because the ramp, being on the north side of the shed, had some moss/algae (green stuff) on it that I should have attended to before. Being wet and slimy, the ramp was an accident waiting to happen, as the say. Well, the accident happened. Lynn reminds me that it’s important to note that what I incurred was a slip-and-fall and not just a fall. Whenever I go to the doctor’s, they ask me if I’ve had any falls. I guess they want to know if my coordination is going. Next time I go, I’ll have to explain that I had a slip-and-fall and not a regular fall. I don’t know if they’ll buy that. They’ll probably just put a note in my chart stating “patient reports experiencing a fall.”

After I slipped and fell. I lay there for a moment evaluating my condition. My left knee was badly twisted because my left leg stayed planted while my right leg slid out from under me. I still have a nasty bruise on that knee although it doesn’t hurt very much now. My butt, hip and back hurt like hell. I wasn’t sure if I would be able to get up and I looked around to see if anyone could see me. I was visible from the road but only if someone passing by looked down my driveway. I was glad of that even though I was home alone and, as I said, not sure if I could get up. There’s that pride thing, which is stupid because if I couldn’t get up, I would have had to crawl to my car to get my cell phone to call for help. The good news is that I was able to get up and I wasn’t hurt as badly as I thought. My lower back hurt like hell and still does, especially in the morning. It’s getting a little better each day, but just a little. The healing for these things is slow, or so I’m told. I’ve never had a back injury like this before and I hope to never have another one. Two Excedrin Extra Strength in the morning seem to take the edge off enough so that I can function during the day, but I still can’t do simple things like bend over to pick up either of our small dogs.

I remember when I was lying at the bottom of the ramp thinking “Really? Melanoma, diabetes, colitis aren’t enough, you gotta throw this at me, too?” OK, so it’s not the trials of Job, but I admit to feeling a bit sorry for myself this week. And then came my battles with the insurance company. Poor Job never had to deal with Cigna.

Let me explain. On the Monday after my fall, it was time to replace the sensor for my CGM (continuous glucose monitor). This is something that I have done about a dozen times before as they need to be replaced every ten days. I’ve never before made an error causing we to waste a sensor but this time I did. It’s embarrassing for me to report what I did but it is just stupid, stupid, stupid. Honestly, it stuff like this that makes me seriously wonder if my cognitive skills are declining. Each sensor comes with an applicator and each applicator has paper on the the outside that you need to remove before applying the sensor. The paper has a code on it that you need to enter into the app in order to activate the sensor. Well, I forgot to remove the paper before I applied the sensor. I remember thinking that it didn’t look right and as soon as I realized why it didn’t look right, I knew that I had screwed the pooch. I had wasted my sensor because you only get one shot at applying the sensor. If you have to take take it off, or if it falls off, you can’t replace it. I had wasted that sensor and I didn’t have another one to replace it, so I would have to reorder another box from the pharmacy and wait until the next day to replace it. Or so I thought.

This is where my new nemesis, Cigna, comes in. Of course, they denied the claim. This wasn’t totally unexpected as this was the first time I had requested CGM supplies through them. BCBS had also denied my claim for CGM supplies, but the appeals process was pretty straight-forward and in short order they did approve them. Not so with Cigna. I’ve spent literally hours on the phone this week talking to the various insurance contacts, my endocrinologists office, and even CGM manufacturer (Dexcom). I’ve honestly lost track of who I spoke to when, but I can say that the staff at my doctor’s office was not very helpful, nor was my doctor responsive when I placed multiple calls trying to get updates from them. By Thursday, I thought I had found the correct paperwork that they needed to fill out (or so I was told by one of Cigna’s customer service people), and because the staff at the doctor’s office kept claiming that they weren’t getting them on their fax machine, I printed it out at home and drove the thirty minutes to the office to hand-deliver it, only to be informed by an irritated medical assistant that this was not the correct form. I’m not sure that it wasn’t the correct form, but who was I to argue? I was also informed by her that it didn’t do any good to call every hour as that just slowed down their work and made it more difficult to deal with my request as they had other patients to deal with, blah, blah, blah. I told her that I would not have had to call so often if someone had just returned one of my phone calls so that would I have had some inkling that my request hadn’t fallen into a black hole. So, from the waiting room, I called Cigna again. Then, whomever I spoke to on the phone told me that, lo and behold, my request was marked for approval but that the doctor needed to submit the prescription to their pharmacy benefit provider along with the appropriate paper work. Apparently, this is because CGM supplies come under the heading of durable medical equipment (DME). To me, something that only last ten days doesn’t seem very durable, but again, who am I to argue? I left a note for the M.A. giving her the correct contact information. Next day, Friday, I follow up with the doctor’s office and the pharmacy benefit provider and find out that the doctor had submitted the prescription but that there’s more paperwork that they need to provide. I’ll have to follow up on Monday to see where that stands.

The good news is that on Friday afternoon, I did get a call from a nurse at the doctor’s office who informs me that the doctor is sorry for the delays and confusion (yeah, me too!) and that if I can come into the office they have a sensor that someone has donated that I can have. I drove to the office (again) and picked up the sensor, but I still haven’t put it on. Why? Cigna.

One of the main reasons I was so stressed about getting my sensors is that I have a PET scan scheduled for May 6th. In order for me to have the test, I’m not allowed to take insulin or have anything other than water six hours prior to arriving at the hospital. I’m also not allowed to have a blood glucose level higher than 220. If it goes above that, the scan will need to be rescheduled. Achieving this control is going to be tricky and I cannot imagine doing it without the CGM. Therefore, I have one sensor at this point, and I don’t want to waste it. At this point, Cigna has not approved me for more CGM equipment and they have also not approved me for the PET scan. I know that insurance companies don’t like to approve PET scans because they cost a lot more than CT scans but the PET scan is really the only way to see if the shadows on the CT scans are active tumors. I think that there’s a good chance that Cigna will eventually approve it if my doctor can make a good argument for it, but there’s also a chance that the scan could be delayed, in which case it could get pushed back beyond my one sensor’s ten-day expiration date. So I’m hoarding that sensor until I’m sure that either I am approved for more CGM equipment or my PET scan is approved and on schedule.

All of this is just adding to my stress level. Every time I get scan, I’m nervous beforehand. Patients refer to this as scanxiety. It’s common and expected because each scan reveals whether the cancer is progressing (getting worse) or responding to treatment. In the past, I was nervous, but I always felt that if it was progressing we could give the treatment more time or try a different treatment. Well, now I’m off treatment and I don’t really have a plan B because my various immune-related side effects would make me ineligible for most other treatments, even trials. The nivolumab was really my last best shot. So, yeah I’m very, very, nervous and that’s not helping my mental state or emotional state.

Wish me luck.

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