To the Moon and Back

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.

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.

I just spent the last hour and a half watching Rich sleep tonight. I noticed that my own breathing was in sync with his as I watched his chest rise and fall. Before I knew it I was filled with awe as I watched this wonderful man sleeping beside me. (For the record, this is rare. Usually if I’m awake and he is asleep it’s just frustrates me that I can’t sleep). Tonight, all I felt as I watched was my heart swelling.

I began to think what it must be like for him. Rich doesn’t say that much about how he feels emotionally unless he is really happy about scan results or really concerned about something. I thought to myself how he is so brave. I then began to imagine what I would be like if I were in his place. I thought how for me it would probably feel like being adrift in the ocean and just treading water all the time to stay afloat. How tiring that would be. The realty is I really don’t know for sure how I would feel and I have no idea what Rich feels either. I wish I could really understand what he is going through.

I decided to write this post tonight as I was thinking about all of this rather than waiting and trying to write it at a time when the thoughts weren’t as fresh. Before getting up to write, I watched Rich a little longer trying to put a word to how he seems to be dealing with this. The word brave that had come to mind earlier seemed to be lacking something. (Though I wasn’t sure why it seemed to be missing something because I have frequently thought of Rich as brave). Courageous was my next thought.

According to Merriam Webster brave means: having or showing mental or moral strength to face danger, fear, or difficulty and

courage means: mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty.

Last summer when Rich was diagnosed he was brave. He decided to fight this. I remember when he was waiting for his appointment, to see about the lump in his armpit, he said if he had cancer he didn’t know if he would go on any kind of treatment. As soon as he got the diagnosis he and I were researching treatments and he was calling to make appointments with melanoma specialists. He wanted treatment started as soon as possible. A quote I read a while back said “it’s ok to be scared, it just means you are about to do something really brave.” Rich had fear but he had that mental strength to face the fear head on.

Here we are eight months later and he is the most courageous person I know. He has continued moving forward with treatment. He’s battling diabetes and even through that he has displayed yet more courage. Rich has definitely had the mental strength to persevere AND withstand fear and difficulty.

This has always been within him. It’s not a new thing but it was the rise of those nasty melanoma tumors that also gave rise me seeing how much courage Rich has. I’m not saying it wasn’t there before, it was, it’s always been there but courage has a way of only coming to the surface when we are challenged on some level.

I am actually a little hesitant to post this. My concern is that by sharing what I think about Rich being courageous and strong, he will think he needs to hold things in to stay strong for me. I don’t ever want Rich to think he has to be strong for me or that I might see him differently if he shares more about what is going on in his head. I already see the courage in his actions (the mental strength to venture, persevere, and withstand danger, fear, or difficulty) anyway so there isn’t anything he can tell me that can change that.

Since Rich was diagnosed I have known that he seems to be handling this much better than I ever could but I could never put it into words. Tonight, after spending time watching him sleep and writing this post, I can definitely say without any hesitation that Rich is the most courageous person I have ever met in my entire life.

What you see here is an itemized description of charges for my previous (7th) infusion of Opdivo and the associated labs, etc. Obviously, the big ticket item is the Opdivo itself. It is expensive stuff. Without the insurance adjustment, it would cost about $1,000,000 per year to keep me alive, also including the scans and doctor visits that aren’t included in this bill. That is pretty sobering.

I won’t get into how expensive everything or why it’s so expensive. It just is. Sometimes, I feel guilty that that much money is is being spent to add a few more years to a life that has already been around the sun 62 times. It’s almost criminal that I’m hogging these resources, when so much more good could be done around the world for the same money. Of course, I console myself by remembering that the money saved by my not having this treatment would probably just go to fatten some corporate balance sheet, or at best, lower someone’s premiums by a fraction of a penny. That’s how the insurance game works. The insurance company bets that I won’t get sick, and I bet that I will. Well, I won! Lucky me.

Anyway, I bring this up because my health insurance will be changing by the end of the month. The company I work for, and through which I get my health insurance, has been acquired by a larger corporation, and I’ll have their health plans to choose from. Good-bye BCBS, hello Cigna.

I have another treatment coming up on April 4th and just a few days between now and then to find out if they’ll cover my treatment and other issues at the same level as my current insurer. Cancer is expensive. So is diabetes. I’ll find out more in the next week or two, but hopefully things will be seamless, with the new insurer picking up where the old one left off. I’m grateful to have access to the health care that I’m receiving and I’m especially grateful that I haven’t had to worry about costs to this point. I hope this continues, but I’ll feel better when I know more.

In other news, I have just had treatment number 8 of this high-priced wonder drug. My labs were good and I feel good. My prognosis is about as good as it gets for stage IV melanoma, which is to say, cautiously optimistic and eternally hopeful.

Who can put a price on that?

Seven months ago when the surgeon called to say that Rich had stage 4 melanoma our worlds crashed. I was full of fear. I didn’t want to lose Rich and I didn’t know how much time we had.

I believe that there is a lesson to learn in everything we go through in life. From past experiences, I have also learned that the hardest things bring the biggest lessons and sometimes we don’t know what those are until much later in life. Seven months ago, I remember wondering how it could be possible to learn anything good from such an awful diagnosis.

I was sitting outside one day thinking about the future and feeling quite fearful about so many things. It occurred to me that neither one of us have ever known how much time we have. None of us know how long we will be here. Rich has stage 4 cancer but it doesn’t change the fact that I could be gone tomorrow or he could from something totally unexpected. The only difference is we know and we can look up statistics and let our minds run away with the information we hear and read.

Perhaps this is why it’s said that cancer makes us appreciate the people we have in our lives. The reality is we never know but it’s a wake up call when we realize just how fragile life is and how every minute counts.

I know that through this Rich and I will both change and there will be many things we will learn along the way. I hate cancer but I am grateful for recognizing the wake up call that came along with it.

When Rich was first diagnosed I was really spinning around. I talked to people about what was going on and frequently I was given advice on how I should or shouldn’t be feeling or thinking. These people were not random strangers, they were people I knew well and they meant well. After our conversations, I frequently felt more isolated. No one seemed to really understand.

I spent the next few months recalling some things people said that I thought were really stupid things to say to someone who is worried about losing her husband. I have one friend, who I love dearly, tell me how things were only going to get worse and how I would eventually need help. I had many people tell me I needed to take care of myself too. I heard I shouldn’t think negative or that I shouldn’t get my hopes up. I had one person tell me I’d be better off in a condo if Rich didn’t make it. The list goes on and on and I felt pulled in all directions. I began to worry about things I hadn’t thought about. I also felt judged and silly for having concerns. There was nowhere I could go to just be me and not have some well-meaning person tell me what I needed to do. It left me feeling alone and slowly I began to not share nearly as much with some people. When we talked I would answer about Rich and quickly move on to asking about their life. Sometime this worked and sometimes it didn’t. If I shared too much I felt horrible and in the times I chose not to share some people thought I was in denial. It really made me crazy but I kept trying to focus on how they were good people who just wanted to help and they didn’t mean to cause anguish with all their advice.

I’ve now come to a place where I can let most things roll off me more easily. At least on most days. I have even examined my own behavior when I’ve met people having a hard time. Things I have said to be helpful probably were not actually helpful at all. I know I have said “take care of yourself too”. Of course they knew they should do that but when you are sick with worry and fear, running to appointments, making decisions, and trying to help the person with cancer it’s tough to think of ways you can actually care of yourself.

I began to think about what I would need people to do so I could feel they were really there. I have been so focused on what I didn’t like that I never gave much thought about what I would like to hear.

My first thought was that I wanted people to just be themselves. I don’t want people to tip toe around me for fear of saying the wrong thing. This is why I don’t say anything when people tell me what I should or shouldn’t be doing, thinking, and feeling. I don’t want to hurt them, they mean well and I don’t want them to go away because I need these people. I much prefer someone try to help and say something that stings a little than to ignore everything and say nothing.

I have no idea how I could ever tell people what would be good to hear but I thought I’d share it here in case anyone reads this and is wondering what might be helpful to someone they know. (Though these may only be things that would help me and could possibly not be right for someone else. We are all different and we all have different needs). By sharing them it will also help me to clarify them for myself as well as help me to help another person going through a rough time.

I need people to listen. Really listen. People tend to jump in with their own thoughts before I can get my thoughts out. Since Rich was diagnosed I feel like I get distracted more easily and forget what I was saying when I’m interrupted. So many times I’ve heard the phrases “why would you say that?” Or “why would you think that”? If they were really listening they would have gotten the answer probably in the next sentence.

In the times that I am frustrated that there is yet another thing on my plate, I need people to sometimes just say “wow, that really sucks”. Because it does suck. Cancer sucks. Watching Rich go through this sucks. The worry sucks. Rich having diabetes that is not well managed sucks. Not everything sucks but when things are out of my control it sucks and if I cannot fix those things then neither can they so no advice will help. Simply “wow, that sucks” would be helpful. I could then just say “yeah it does” and move on and know that I was heard.

I want people to understand that melanoma is not just a little thing. I would love it if they would do some research to learn more about it instead of making assumptions. I know this is a big thing to ask but I’m referring to the people closest to me. If they really understood more about melanoma and immunotherapy then I wouldn’t feel like I had to repeat the same things. I talked to someone who actually asked me if I was sure that Rich had melanoma because someone told him melanoma was only on the skin and myeloma was inside. If he has read anything he wouldn’t have even questioned if perhaps I could have been mistaken about the type of cancer my husband has. The more a person knows about melanoma the more they can listen.

Lastly, and there may be more I haven’t thought of but this will end up too long if I think too much, I want people to remember that even though we are going through a rough time we do have other things in our life besides cancer. One day I was going to be going away for the day and someone asked me how I could leave Rich for a whole day. Rich goes to work, I go to work. We do things. He isn’t helpless and to be with each other constantly because we were worried about a possible side effect would drive us both crazy. I love Rich with all my heart and I will take care of him always in any way that I can but we are normal people and don’t spend every second together just because he has melanoma. Again, if people listened they would know that it’s not a problem for me to do something two hours away from my house one day.

What I want is for people to treat us like normal people, to spend a little time researching about melanoma, to put aside their need to fix the unfixable and just help me to not feel like the only one that thinks it sucks. What I need is for people to do one thing and that is to be themselves and just listen.

I was talking with Lynn this morning about how fortunate I felt. I know I have melanoma, and now diabetes, but the melanoma isn’t affecting my daily life at this point. I can do the things I could before and my energy level has been pretty good lately. I’m not taking my current state for granted, though. I know that I’m just one scan away or one symptom away from having a much different experience. That’s my world now. There’s no cure, just hope and worry.

As I said, I feel good, and I think I look pretty good. My skin color is somewhat pale. Guess I’m not getting enough sun these days. Go figure!

I just mention this because I think people often seem surprised that I don’t match their mental image of a “cancer patient.” I think I know what they’re expecting. It’s what I would have expected prior to my diagnosis. I know now, based on my own experience, and from the other melanoma travelers I’ve seen at my oncologist’s offices, there is no such thing as a typical melanoma patient. I also know that it’s possible to look good and feel like crap. If you want to know how someone is really doing, ask. You might get an honest answer.

Truth is, I’m not likely to give an honest answer. I tend to gloss over the low points, even with my health care providers. As I noted, I’m feeling pretty good, cancer-wise, but I’m struggling with diabetes management. I got the diabetes as a side-effect of Nivolumab treatment, so it’s all part of my journey now. I tend to gloss over that because I don’t want to go into the details all the time, but also because I want to project an image of “I got this.” Mostly, I don’t want to be that “cancer patient” that people have in their minds. That I still have in my mind.

I was what I would call a sickly kid. I’ve had asthma for as long as I can remember, but it wasn’t until I was in my early 20s that I got medication that allowed me to effectively manage it. Until then I was constantly at risk of running out of breath or having a serious attack that left me gasping for breath for hours. I avoided many activities because of fear of those attacks. The asthma definitely affected my life and my self-image. It wasn’t until I got that managed in my 20s that I gained some degree of control over my life and also began to gain some self-confidence.

That’s the attitude that I internalized, the attitude that you can’t be a real man if you are weak or vulnerable. Or sick. I realize now that I have not shaken off that attitude. So I often dissemble. I don’t mean to deceive or hide what’s really going on, but it’s a reflex. I have to really trust to be really honest about this stuff. Or be really tired.

So, if you want to know how someone is doing, just ask. Just know that you might not get a totally honest answer. That’s OK. You should check in regularly and ask them again, though. It shows you care and, with time and trust, you might get an honest answer.

Just ask.

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