Discoordinated care

Let me just get it out of the way right now. I’m not happy with my care team today. In addition to having melanoma, and diabetes, and lately colitis, I’ve started having another issue. As you might recall from my previous posts, I have been dealing with my latest immunotherapy-related side effect, colitis. My oncologist put me on a tapering course of steroids and that seems to have the diarrhea under control. I’m currently about half-way through the course of treatment and (knock on wood), things are getting better on that front. If anything, I’ve gone in the other direction as my bowel movements are normal when I have them, but they’re infrequent. For now, I’ll take not often enough over much too often. I’m hoping that I go back to being a regular guy once the steroids are out of my system, which should be in about ten days.

The new issue I’m having is also bathroom-related. I find myself need to urinate just about every hour, day and night. Often I have the urge to go but not much comes out or I do go but I never feel that my bladder is completely empty. I’m not in pain, but it’s annoying as hell and I worry that it might be a sign of something serious. Or not. I’ve had an enlarged prostate for years, what they call BPH (benign prostate hyperplasia). It’s something that a lot of guys my age deal with and something that I’ve dealt with over the years. It’s a rare night that I don’t wake up for at least one bathroom visit, but this recent episode is much worse, some nights every hour. I’m not sure that diabetes or prednisone don’t make this condition worse. I’ve read conflicting things in my Google searches, and my oncologist and endocrinologist both suggest I see a urologist (more on that in a bit). Of course, it’s hard not to think of the worst, that my melanoma has spread to my kidneys or my bladder, or even that I have prostate cancer. I really don’t think that that is the case here, but the mind has a mind of its own when it comes to the unknown.

Backing up. The last time I saw my oncologist, he prescribed prednisone and had me make a follow-up appointment to see him in two weeks, just in case. He said that I could cancel the appointment if I felt better and didn’t feel the need to see him. I did feel better, diarrhea-wise, but I was feeling not so great urologically. I called them on Monday of this week, described my symptoms and the nurse said that they would arrange a referral with a urologist and get back to me. They said that I’d be more likely to get in sooner that I would be if I just called myself. Wednesday morning, today, I still hadn’t heard from them about the referral. This morning I called them to see if the doctor wanted me to keep the appointment, in light of my progress on one front and in light of the new symptoms. I got a quick call-back from another doctor’s nurse, who took all my information and said that someone would get back shortly. I explained that I need to hear back soon because both my wife and I would have to arrange time off of work if I was going to keep the appointment. While she was on the phone, she gave me the name of the urologist that they wanted me to see. This was all by 9:00 am. I go to work and wait for the phone call. Hours pass. I’m busy at work and I can’t get away for lunch or to step out to make phone calls. Finally, around 4:00 pm, I call the urologist that they “referred” me, too. Turns out that he doesn’t see patients with urinary hesitancy, which is I guess what was in my chart, but they could offer me an appointment with a P.A. in about a month. Argh!! I took the appointment, but I don’t plan on keeping it. If I need a urologist, I’ll find one that’s more local to me. Next, aggravated beyond words with the lack of response from my care team, I called and canceled my appointment for tomorrow. I never did hear from them and I don’t expect to.

I’m not sure what would be the benefit of keeping the appointment. I guess my oncologist is good at cancer, but when it comes to other issues, he isn’t overly knowledgeable or concerned. The knowledge part is OK, I don’t expect him to be an expert in every organ and system in the body, but the concerned part is starting to piss me off, if you’ll pardon that expression. I’m pretty sure he would have just ordered the standard labs and then referred my to some other ‘ologist.

This is the frustrating part, that they tell me to call them at the first sign of any symptoms because only they can manage my care. They don’t want me to see another doctor without going through them first and they don’t want me going to the ER at all unless it’s a life-or-death emergency. That’s what they tell me, but my experience has been the opposite of that, that calling them just adds delay when I’m likely to be referred to another specialist anyway. Well, I’ve accepted that this is the age of specialization and I’ll let my specialists specialize. And if I have an issue that needs prompt attention, I’m going to the ER or a walk-in clinic. The idea of coordinated care sound lovely, but I’ve realized that the only one who can truly coordinate my care is me.

In other news, I had hoped to have cute chick pics showing the chicks romping in their new coop. Very sadly, we decided to re-home the chicks. For a variety of reasons, we decided that this is not the time. That’s not to say there won’t be chicks in our future. We were both looking forward to welcoming new lives in our lives and giving us a pleasant distraction from all the melanoma crap. We haven’t given up the idea, but next time we’ll have their home set up before we bring them into our house and hearts.

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Stop the Ride. We Wanna Get Off!

I never liked rollercoasters yet I went on them many times and each time I tried to like them. Maybe it was for the adventure or maybe to show myself they really were as fun as people I knew had said. Maybe it was peer pressure or just plain stupidity on my part for choosing to go on a ride that I had never had a good experience on. Some people felt a rush, I only felt ebbing and flowing terror the whole time.

I’d get on them and once they started to move I’d wish I never got on. Then, up the first hill, not so bad. “I can maybe deal with this.” The car reaches the top, only for a second, but enough to know for sure that it’s going downhill quickly and there was no getting off the ride. I remember screaming all the way down and telling myself at the bottom that it was going to be ok. Just breathe and relax. Another slow uphill, the car chugging along and then whoosh down again each time trying to convince myself the ride was going to stop, all would be well and I could get off.

That’s what this journey has been like. This is one journey we don’t want to be on but we don’t have. a choice. When I think of a journey I think of adventure, spontaneity, growth and fun but this journey isn’t any of that. It’s been a wild ride. Too wild. One day things look pretty bleak and the next we are breathing and starting to relax a bit. Up and down constantly. Much like I felt on those rollercoasters years ago.

Right now, I’m thankful that we are on the uphill portion of the roller coaster. As it chugs along uphill I am reminded of the words to The Little Engine That Could. “I think I can, think I can” and I say something similar to myself “it’ll all be ok, it’ll all be ok.”

When on the rollercoaster one knows that there is always another quick downhill before it levels off. That’s how things have been so far but this time it’s going to level off. I’m not expecting any more downhills. Rich has dealt with enough so this coaster is being reengineered to stop at the top so we can get off and get on a ride that we want to be on.

On the rickety old wooden rollercoasters, every bump was felt and I was sure something was wrong and the track was going to break. That never happened. Just a bump and we kept moving. Rich has scans next month so I expect to feel a little bump where I wonder if something is wrong with the track but that’s just how scanxiety is and it will be ok. This coaster has to just keep going up and up. No more ups and downs. When it finally levels off we will get off, able to experience all the beautiful views from the top, and set off on a journey of our choice together.

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That sinking feeling

As expected, it looks like I do have colitis and I am getting kicked off of Nivolumab treatment. The image on the left here represents my somewhat mixed thoughts. On the one hand, I feel like I have had my life preserver taken away; on the other hand, Nivolumab might be a sinking ship at this point, at least for me.

Let’s see. In November, I got hit with diabetes, which put me in the ICU for a day and a hospital bed for week. I also have elevated thyroid levels now. Although it’s not currently enough to treat, I have to wonder if some of what I’m dealing with might be related to that. Now, after eight treatments, I’m being treated for colitis. The doc didn’t run all the tests, but I did have grade 1 or 2 diarrhea (it depends on what day you were counting) and I did have leukocytes in my stool but no bacteria or parasites. It would take a scan or a ‘scope to definitively diagnose, but going by the duck test (if it walks like a duck, and quacks like a duck, it’s probably a duck), it’s being treated as colitis, which I have no reason to doubt that it is. Since being on put on prednisone three days ago, my diarrhea has stopped, as has everything else. I’ve never been one of those people who were obsessed with their bowel habits, but I’d really like to have a good, solid dump right now.

As stated above, my feelings about being taken off Nivolumab treatment are mixed. I expected that my treatment would be suspended while we dealt with this diarrhea/colitis issue, but I was hoping that it would only be a temporary suspension and that we could resume treatment once those issues were under control. From what I’ve read online, that seems to be the protocol at many cancer centers, at least for colitis presenting with grade 1 or 2 diarrhea. When the doc told me that I would be taken off of treatment completly, however, it was an emotional blow that I wasn’t quite prepared for. I just wanted to go home and take to bed, which I did for several hours after we returned home.

On the way to the clinic, Lynn asked me if I would want a treatment that day if the doc offered me the choice. I said, “of course.” I knew by her reaction that wouldn’t have been her choice to have a treatment before getting this latest side effect under control, but I was still seeing Nivolumab as my life preserver. Until the colitis, I felt good and my cancer had not progressed in months. I was willing to accept the “get diabetes, get rid of melanoma” trade, and I was even willing to accept losing my thyroid function. I was thinking that this diarrhea/colitis was just another bump in the road, but after researching it and thinking about it, I’m seeing it as more as leaving the highway and heading out onto an unpaved, uncharted, and dangerous road. Colitis can get nasty. Some people get it and never get rid of it, and have to continue on more and more aggressive treatments and eventually have to have part of their intestines removed. And some die. That is some double-edged life preserver.

I’ll find out more next month when I return to Smilow for scans. I’m to get another MRI on my brain to see if anything is growing there and a PET scan for my chest and abdomen. The PET scan will be my first and it will show where there is any active cancer in my body. With the CT scans, all they can really see are shadows, and they judge progress by whether the shadows are getting bigger or smaller and whether they see new shadows that they haven’t seen before. The PET scan allows them to see if those shadows are active tumors, or possibly scarring from previous disease or necrosis. Apparently, active tumors “light up” on PET scans. I’m looking forward to a total blackout.

If the scans don’t turn up anything new or active, then the plan is that I will just continue to get scans every three months for 6 months to a year, then less frequently after that. If they do show active cancer, I’m not sure what my options are. I don’t seem to have the gene mutations that would make me a candidate for targeted therapy, and I’m pretty sure that my previous immunotherapy-related reactions would disqualify me for most trials, even if there were something promising on the horizon, which I don’t think there is. My doc seemed pretty definitive that going back on Nivolumab treatment would not be an option even if I did get the colitis under control, at least not one that he would approve. I could shop around for another center that might approve, but would I want the Nivolumab even if I could get it? I honestly don’t know right now and I don’t think I can answer that question until after those next, dreaded/anticipated scans.

It’s funny how my outlook has gone back and forth since my diagnosis. When I was first diagnosed with stage IV last July, I wasn’t sure if I would make it to Christmas, or even my next birthday (September). Then after a few good scans, I began to think that I might be one of the lucky ones, the survivors who battle on for years and years. Now, I’m back to thinking much more short-term. I don’t know if I have years or months. I’ve learned that one bad side effect could take me out in just a few days. Right now, the weather is finally starting to feel more spring-like and I’m looking forward to enjoying the days ahead, if we can just get past all this chicken-shit.

Speaking of chickens, the chicks are getting bigger and showing their individual personalities. We’re having an Eglu coop/run delivered next week, so the hope is that they can go out in it in the evening for a few hours so that they can get used to being chickens and scratch in the dirt, and then later when they are fully feathered, they can move to their new home full-time. More cute chick-pics to come.

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Why Ask Why

This post is more of a rant than anything else. I just need to get some stuff out and by writing it I’m hoping I will help get it off my chest. Also, if anyone else, who feels similar, happens to read this they will know they aren’t alone in their feelings of helplessness at watching someone they love suffer. I try not to just toss everything out because I don’t want Rich to worry but he wanted this blog to show both sides so here is my side of today’s news. (Rich, when you read this, please don’t worry. I’m frustrated but fine. I love you). I try to stay positive and I try to see the silver lining. Some days that’s easier than others and today has not been one of those easy days. It’s days like these that I ask myself “why”.

We went to Yale today and they are now treating Rich with a high dose of steroids for colitis. He has been taken off Nivolumab. A PET scan is scheduled for the beginning of May to see if there are any active tumors so we will know more at that time but we are hoping for a clear scan because as of now there isn’t anything else for him to try. He is BRAF 600 negative so targeted therapy is out. Also, we are hoping that the steroid dose he was put on today will help with the colitis without causing more issues with his diabetes.

The steroids make his glucose spike and no one seems to know how to manage his diabetes. He’s been trying to figure it out by himself since November and has had trouble. Steroids make it much harder. He doesn’t know how much insulin to give himself and how much to eat while on the steroids. He has to be on them for a month. There are few foods he has left to eat because the combination of diabetes and colitis takes away the ability to eat most food groups. Avoid fiber and dairy with colitis, eat a bland diet but avoid carbs because those raise his sugar. He has melanoma, diabetes and colitis and he can’t even eat what he wants and when he wants anymore. Such a simple thing that is usually taken for granted until you can’t just have a meal when you want to and other times you are forcing glucose tabs down when you don’t want to. Being able to eat what and when you want to is a huge part of life.

And of course, being taken off the immunotherapy and not having a plan B is sooo scary that I can hardly even process that information fully right now so I’m going to try to stay positive that that PET scan comes back clear. I guess that’s about all the positivity I can hold on to today. At least it’s a little bit.

I guess it is normal for people to ask themselves “why”. “Why did this have to happen?” “Why did it happen to Rich?” There are times that I want to scream that at the top of my lungs in hopes of hearing an answer. I want to know why because if I know that maybe I could come up with a plan to fix it but the reality is that I know there isn’t an answer. There just is no reason why such a wonderful person would have to go through all of this. It doesn’t make sense and life seems so unfair. No matter how I try to see it from a different angle I just can’t. It’s unfair and it sucks and I can’t fix this for Rich and I hate the fact that I can’t.

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Prednisolone, diabetes, and more crap

Well, I got the test results back from last weekend’s fecal adventures. Turns out that it’s not bacterial and its not a parasite, but I am positive for leukocytes. Without a CT scan or colonoscopy, it’s not 100% positive, but as it looks now, it’s likely that I have Crohn’s disease or colitis. At least that’s how my oncologist is treating it. He prescribed prednisolone, an oral steroid, which I have been taking since two days ago. The results so far have been mixed.

From having about 4-5 episodes before starting the steroid treatment, I went down to no bowel movements of any kind the day after (yesterday). I was feeling pretty good, and pretty cocky, so I went into work today for the first time in almost two weeks. I was doing OK until after lunch. Maybe it was the coffee I had this morning. I know I should avoid caffeine, but I couldn’t handle the decaf and I figured one cup wouldn’t hurt me. Well, shortly after lunchtime (I didn’t actually eat lunch), I could feel rumblings in my innards, which I hoped were just things settling down there. Nope. Just before leaving for the day. I felt an urgent call and heeded it. More diarrhea. I managed to make it home, and then, much more of the same. Aw, shit! I guess I don’t have this, whatever it is, licked so easily.

Did you know that steroids can mess up your blood sugar? It can make it go sky high, and for a diabetic that’s another challenge to deal with. I’ve been doing well managing my glucose level until now. As soon as I took the steroids, my blood glucose shot through the roof and I’m having a hard time managing it. I’ve doubled and tripled my insulin and cut way back on my carb intake and I’m just barely managing. Right now it’s OK, but probably because I’ve hardly eaten anything all day so far. If I eat anything, up she goes. I hope that I only have to take these steroids for a for a few more days, but if the diarrhea doesn’t quiet down, I may be switched to something stronger.

I’m scheduled for another infusion tomorrow, but it seems unlikely that I’ll be getting it. Prednisolone suppresses the immune system and Nivolumab stimulates it, so it doesn’t seem like you’d want to take the two together. Also, if what I have is an immune reaction, I may be taken off treatment altogether. That is a big worry. I still have that pesky melanoma to deal with and I don’t want to be deprived of my best weapon against it.

I’ll find out more tomorrow when I go to Yale and meet with my doctor to discuss. Right now, I’m feeling like this is a set-back. Hope it’s just temporary.

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A shitty week

Warning: the following post contains references to poop, poop, and more poop. That’s just the kind of week that it was.

I usually try to keep my posts here on the lighter side because I try to stay positive, and even when I’m not feeling positive, I try to look for the positive because that sometimes helps me feel positive. This week, I’m having a hard time finding the positive. This last Sunday I woke up feeling fatigued (I have to remember to say fatigued instead of tired, as Lynn reminds me, when I mean weak and listless instead of just sleepy). I attributed that to stress or maybe a side effect of Nivolumab, as I sometimes have days now when I feel weak and listless, but thankfully those are few. I took a nap and later that day I felt OK, so I didn’t think anything more of it. Monday morning I woke up and I had diarrhea. It wasn’t the kind of mad-dash-to the-toilet diarrhea, but when I sat down to heed nature’s call, my butt-hole became a faucet of liquid poopiness. Not a big deal, unpleasant and inconvenient, but one of those things that can happen from time to time for a variety of reasons. As I said, not normally a big deal, except when you are taking immunotherapy drugs. Immunotherapy drugs can cause many different side effects, including Type 1 Diabetes, which I now have as a result of Nivolumab treatment. Another, and more common, side effect is colitis. Colitis, if not caught early, can be serious and life-threatening, which is why patients on immunotherapy and their doctors are on the lookout for early signs such as diarrhea.

I didn’t call the doctor right away because it wasn’t that severe at first. Diarrhea, like just about everything else I’m dealing with, has different grades. I won’t bore you with the specifics, but at this point, I was at Grade 1. If you’d like to learn more about diarrhea and grading, I refer you to the following page:

https://www.cancer.net/coping-with-cancer/physical-emotional-and-social-effects-cancer/managing-physical-side-effects/diarrhea

I waited until Wednesday morning to call my care team at Smilow Cancer Hospital in New Haven. I have a card that I carry in my wallet, and on that card is a phone number for the melanoma clinic there. When you call that number, an answering service takes your message and you then wait for a call-back. When you get the call-back, you give your information to a nurse and then the nurse tells you that she will speak with the doctor and get back to you. Several hours later that day, the nurse calls back and tells you what the doctor advises. This appears to be the standard protocol. It was the same way when I was being treated at Dana Farber in Boston. The doctor’s advise was to watch and wait, and to call back immediately if things got worse or to check back on Friday if things did not get better.

So I watched and I waited. While I was watching an waiting, I continued to have liquid poops. I also lost my appetite and was had to force myself to eat. Eating was doubly difficult because I also have diabetes. When people get diarrhea, they are told to eat bland foods and eat the BRAT diet. BRAT stands for bananas, rice, apple sauce. and toast. These are all high-carbohydrate foods that diabetics need to limit or avoid. People with diarrhea are also told to avoid raw vegetables, most fruits, dairy and fiber, and other things such as caffeine and alcohol. This doesn’t really leave much except for things like clear broths and water. Lots of water is important because you don’t want to get dehydrated. It’s hard to keep your weight up on that kind of diet and I lost seven pounds this week, so I now weigh about 20-25 pounds less than I did before I was diagnosed at Stage IV last July. As I told Lynn, I feel like I’m disappearing out my asshole.

I continued to watch and wait until Friday and that’s when I really began to question my medical care. By Friday, I was not only not better, but I was probably up to stage 2 diarrhea at this point. I called my care team around 8:30 Friday morning, and after the usual leave a message, get a call-back, talk to the nurse, nurse talks to the doctor, nurse calls back song-and-dance, I hear back around 2 pm and they tell me to go to local lab to do a stool sample for testing. So, I drive to the lab, but the lab does not have the lab orders from Smilow. We (the lab tech and I) call my care team, leave a message, get a call-back, and the nurse tells the tech over the phone what kind of lab test they want and that they’ll fax the order immediately. I wait there, and wait, until the lab tech tells me that I can go home with the kit and bring it back in the morning by which time they should have the lab order. Next morning. Saturday. I shat in the hat (this adventure would make a great Dr. Seuss book), collected my soupy sample and drove to the lab to drop it off.

Surprise! The lab still didn’t have the lab order, so they sadly cannot accept my offering. I call my care team, get the answering service, leave a message, wait for a call-back, don’t get a call back after 40 minutes, call the answering service, leave another message, and finally get a call-back, but by this time the lab has closed. Argh. I tell the nurse on the phone where I’m at and what I need and she tells me that she’ll look for a lab in my area and call me back. I wait for the call-back, don’t get the call-back, so I call my care team again, leave another message, and then get a call back from the nurse.

Excuse me here, I have to go poop. BRB.

So where was I? Oh yeah, call back from the nurse. She said that she couldn’t find a lab because she wasn’t sure what towns were close to where I was. She was also confused about whether I was in Plainfield or Plainville. I was in Plainfield, but anyway, we finally decide that I will take my poor poop to Smilow itself, which at this point is an hour and thirty minutes from where I’m at, not counting a stop at home to pick up Lynn. And to poop. At the end of this ordeal, Lynn and I drive to Smilow, find our way to the 7th floor and give the nurse my parcel of poop. She says that they’ll start processing it immediately but that it may take a few days for all the labs to come in. Finally, we head back home where I take a long, exhausted nap.

I didn’t count how many times I used the phrase my care team in this post, but that’s what they want me to think of them as. My care team includes my doctor, the nurses on his staff, and all the techs and support professionals that make hospitals run. However, I’ve been thinking a lot about that word care today. How much do they care and what do they care about? I could write another blog post on that subject but let’s leave it for now that I have to ask myself that question. I felt this week that I actually got worse care because I had cancer than if I didn’t. If I did not have cancer and had diarrhea, I would call my primary and he/she would tell me to try some over-the-counter remedy such as Imodium, or maybe they would order some lab work. I think that is what my care team should have done when I called on Wednesday, instead of waiting another two days for things to get worse. If this were colitis, getting it treated early can literally make the difference between life and death. I don’t think it is colitis, but they don’t know that. As it is now, it may be well into the next week before I know what’s going on with my gastrointestinal issues. If then. I’m trying to see things from their point of view, but I can’t. I can’t if they really care about patients and care about providing patient care.

So that was my shitty week. I could rant and scream to the heavens about medical bureaucracy, seeming indifference, confusion and incompetence, but instead I’ll just dump it all here.

Now, where did I put the air freshener?

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Genuine Empathy

I have a lot of respect for people within the medical community who have knowledge and expertise in their field; however, there is something else that I believe is quite valuable to patients. That is genuine empathy. I have worked in the medical field and I understand that it isn’t a good thing to get too attached to patients or doctors and nurses and other medical staff would probably lay awake every night worrying about the patients they have seen. It is a balance but it is possible to be attached while in a medical setting and not so close it takes over your life outside of work. Clinical empathy is a must but that isn’t the same as real genuine empathy and it seems that many times people in the medical community lean toward clinical detachment instead.

It is ok to feel and to show genuine empathy to a patient. I once had a hairy chested man ask me why I was cringing when it was his chest that I was pulling the EKG pads off of. I felt silly (I didn’t even know I was making a face but I knew it was going to hurt) but we both had a good laugh about it and he knew I cared and didn’t want him to feel pain. I took in patients that were angry and stressed, they felt that their symptoms were being ignored. Just listening and letting them know I believed them helped them so much. I didn’t always understand their exact pain but I knew they weren’t feeling cared for emotionally. In the office things were always hurried, there were other patients to be taken in and I didn’t want to keep a doctor waiting but I always found time to do my best to at least let them know I saw them as more than their symptoms. Patients lives matter. Patients are human beings. People in the medical community are also human beings and I believe that many of them do feel for their patients but it’s so ingrained to be sure to stay a bit detached that these people have forgotten what it is to show genuine empathy.

In school people are taught what to do to show a patient that you care but in my opinion if you shouldn’t even go into the medical field unless you care about people to begin with but that’s probably best saved for another post. For now I will try to stick to what originally prompted me to write this one.

Rich hasn’t been feeling well for almost a week. He’s lost 7 pounds already and we were told today to wait another 72 hours for a lab test to be completed. I’m afraid he may become so dehydrated he’ll end up in the hospital before then. He’s upset and angry and so am I. He called the doctor on Wednesday (after waiting two days to see if it was just a “bug”). They said call back on Friday if it got worse so here we are now, on Saturday, getting a test done, that could have been done on Wednesday, waiting another 72 hours.

What hurts me the most in all of it is that Rich feels no one really cares that he may be having a side effect to the immunotherapy he is on. The people he’s talked with and the nurse today have been pleasant but the fact that he feels that they don’t care then clearly genuine empathy has not been shown. To be clear, I’m not saying that I believe they lack empathy but what I am saying is that it wasn’t expressed in a way that left Rich feeling cared about. I have similar feelings about it and I have spent most of the day trying to put myself in the shoes of these people to try to understand why things are the way they are.

It’s proven that patients get well more quickly when they feel people care. Patients become more patient, staff and medical practitioners don’t have angry patients taking their frustrations out on them. Genuine empathy helps patients as much, or maybe even more, than medicine yet it’s hard to come by when you are a patient and I wish there was a way to change that but I don’t know how.

In the case of this week with Rich I’ve been thinking about how things could have been done differently. We may still have had to wait 72 hours but what would have made us feel differently than we do right now? First, when he called about the issue on Wednesday if they listened maybe they could have ordered the test that day or at least explain why they said “call back Friday if it’s worse”. What was the purpose of the wait and see approach when it had already gone on for 2 days. The lab didn’t get the order from the doctor and they closed before Rich got a call back from the doctor. I understand people want to go home but maybe even telling him labs that would still be open? Anything just so he felt understood and had another plan of action. When we did go to hospital lab and we were told to wait 72 hours the nurse did explain it takes that long for the test but there was no empathy expressed when I told her how Rich was losing a lot of weight and how tired he is. I didn’t expect her to gush but I wished she wasn’t so blasé about the whole thing. She just said “well if he gets a fever go to the ER”. Perhaps even a simple statement saying “sorry, this has been a rough week for you. We are doing all we can right now. I wish it could be done more quickly too”. Anything other than “if it gets worse call or go to the ER or as the lab said “we will be closing at 11”.

I’m very worried about Rich but I’m just as angry about the way this has been handled and the way he has been treated. He has cancer but he is a human being and he (and all other patients) should be treated as such.

The medical field needs to change. Detachment isn’t really an option if you really want to help patients (which I’d like to believe that most people do). Genuine empathy (not just clinical empathy) needs to be shown because no matter how awful a patients symptoms are it hurts even more to deal with a medical community where you don’t feel they really care about you. Genuine empathy is all it takes and there needs to be more of it.

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Birds of a feather

When life hands you melanoma, add chickens. Well, at least that’s we did this week. We’ve talked about “homesteading” for a while. For us city slickers, homesteading has mostly meant shopping the organic food aisle in the supermarket and going to farmer’s markets when we have the time (or are able to get out of the house before noon on Saturday morning). Sure, we’ve talked about growing some of our own vegetables and even in our more fanciful moments raising our own chickens for the eggs, but it has always ended in just talk. Well, this week we did it. We went to Tractor Supply and picked out six Buff Orpington chicks and took them home. We don’t have a coop or a run or even a plan at this point, but right now they’re “brooding” in a dog crate in the basement. We have several weeks before we have to have their outdoor home established and ready for occupancy. Who knew that there was so much to learn about chickens and chicken farming? It has been an education already and we’re just at the very beginning.

I’m looking at this as an opportunity to do something neither of us have done before and to embrace nature and to embrace life. Yep, life. We have six more lives in our lives now. Neither of us knows what will happen as far as my health goes. Right now I am feeling good and ready to tackle this project. It could be that at some point I might not be feeling so spunky, and we might regret this responsibility that we’ve taken on, but we can’t worry about that now. Now, we’re embracing life, six new lives to be precise. Or at least as many of the six that turn out to be hens. We’re not 100% guaranteed that the cute baby chicks that we took home from the store are all hens. Some of them may be roosters. We’re not quite ready to embrace roosters, although we don’t know what we’ll do with the chicks that turn out to be cock-a-doodle-doers.

Here are the six new members of our household. They’re temporarily in a storage bin while their cage is being cleaned.

In other news this week, Lynn and I attended a support group for melanoma patients and their partners at Yale. We’ve been meaning to go to this group before but one thing or another always got in the way. It was great to finally get to the meeting, and to meet and talk with people who have been through and are still going through what we’re going through. Some of them, like us, are recently diagnosed, but one gentlemen has been fighting melanoma for well over ten years. It was great talking with them because, as Lynn said, “they get it.”

Birds of a feather, indeed.

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Support

I went to a melanoma support group meeting tonight with Rich. We have been trying to go since he was diagnosed but something always seemed to come up on that one day a month.

Maybe I should have waited to post until I was able to describe better how it felt to be there. All I can put into words right now is that it felt really, really good to be in the same room with people who understand.

I was a little nervous about walking into a room full of strangers but I was comfortable as soon as I went in. People shared openly with one another and I felt like I was part of the group.

I hadn’t met any of them before but I felt like they somehow knew me better than many people who have known me for years. Such a great feeling and such a wonderful group of people.

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A profile of courage

Cowardly Lion:
Courage. What makes a King out of a slave? Courage.
What makes the flag on the mast to wave? Courage.
What makes the elephant charge his tusk in the misty mist or the dusky dusk?
What makes the muskrat guard his musk? Courage.
What makes the Sphinx the 7th Wonder? Courage.
What makes the dawn come up like THUNDER?! Courage.
What makes the Hottentot so hot?
What puts the “ape” in ape-ricot?
Whatta they got that I ain’t got?
 Dorothy & Friends:  Courage!
Cowardly Lion: You can say that again.

I’ve never thought of myself as a brave person. I like to think that I would respond honorably in the heat of battle, whatever that battle might be, but I’ve never been in a war, I’ve never had to rush into a burning building to rescue a child, and I’ve never had to jump in to rescue anyone from drowning, just to list three possible scenarios where a person’s courage might be tested. I have no need to be a hero, but I think I would do what’s needed when it’s needed. Frankly, I hope that I am never tested in any of those ways.

Of course, there are many other, less dramatic ways that a person’s courage can be tested. One of them is dealing with everything that goes with getting a diagnosis of stage IV cancer. My courage has been tested. I thought I knew how I would react, but I surprised myself.

I thought that I would eschew treatment and let nature take its course. After all, my past experience hadn’t provided me with any models that would encourage me to seek treatment. The people that I knew who fought cancer with treatment had not fared very well. The treatment for them was chemo, and the chemo made them suffer, and then they died anyway. That’s how it is with cancer sometimes. Sometimes the chemo works and people get better, but those examples were outside my experience. To me, advanced cancer was a death sentence and treatment (chemo) was a death sentence with extra suffering thrown in for good measure. Another example that I have to guide me is the way that my mother dealt with her own cancer diagnosis. She was in her 80’s when she was diagnosed with breast cancer. She chose not have treatment or surgery. She lived another six or seven years before the cancer took her life, and I’m sure she suffered, especially toward the end, but she never let anyone know it except at the very end. This is not the only reason why I think my mother was the toughest, most courageous person I’ve ever known, but it’s a good example, and her fortitude is a model for my own thinking and behavior. I often wish that I was even half as tough as her.

So, I thought that I would decline treatment, but then the doctors told me about immunotherapy and how it wasn’t as toxic as chemo because it works with the body’s own immune system and that it had shown promise in extending lives with quality. Whether that is true or not about it not being as toxic as chemo I’ll leave for another post. Maybe. Anyway, when I heard that I might be getting a stay of execution, I jumped at it like the condemned man awaiting the Governor’s phone call. Is that courage, or lack thereof? I don’t know. I know that I’m not ready to die (who is) and that I have unfinished business in this earthly realm before I shuffle off to Buffalo (or wherever), and that I have people who care for me including an amazing wife who loves me and does not deserve to wear widow’s weeds now. All of these things are in my mind, so when I have to deal with setbacks like getting diabetes and dealing with that, I know there are reasons, good reasons, for not throwing in the towel just yet. To me, that’s not courage, although it’s not not courage either. It’s just doing what needs to be done when it needs to be done.

When I hear people say how brave I must be, I don’t argue with them. I know that it’s not just about me because there are a lot of other people, people with advanced melanoma, and people struggling against other diseases, for whom the word courage applies. It’s just that courage doesn’t always manifest itself they way it is usually portrayed in movies (except maybe in The Wizard of Oz). Often it manifests itself in the simple act of choosing life and moving forward from there.

Courage is more exhilarating than fear and in the long run it is easier. We do not have to become heroes overnight. Just a step at a time, meeting each new thing that comes up, seeing it is not as dreadful as it appeared, discovering we have the strength to stare it down.

Eleanor Roosevelt

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