To the Moon and Back

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.

Edit

There’s an old saying that goes “growing old isn’t so bad once you consider the alternative.” While I’ve always understood and agreed with this intellectually, the truth of this adage has really struck home with my diagnosis. In addition to the cancer, cancer treatment, diabetes, and diabetes management, I’ve also had to contend with some of the natural shocks that flesh is heir to. Put more prosaically, I now find myself dealing with some of the common and not so common complaints that come with growing older.

When I was younger, I had two ears, a left ear and a right ear. They sat there, on either side of my head and I never paid them much mind except to occasionally fret that they might be too large. Ah, the vanity of youth! I still have two ears now, a good ear and a not so good ear. I now have to position myself so that my “good” ear is tilted toward the sound source if I want to hear it clearly. Audiologists and ENTs I have consulted assure me that my hearing loss is age-related and irreversible except with hearing aids. I haven’t gone there, yet. In the meantime, I crank up the volume on my radio and television, and find myself saying “can you repeat that, please?” with increasing frequency. Yeah, I’m that old guy. All I need is an ear trumpet.

My vision is also changing for the worse. I’ve worn glasses since I was a kid and tried bifocals for a while. I’ve switched back to single lens glasses because I found that I was taking my glasses off to see anything up close anyway. Now I take my glasses off for just about anything except for driving and watching television. That doesn’t mean I can see well without them, it’s just that I’ve settled for “good enough” the rest of the time. Is it just me, or has 10 pt type gotten smaller? Oh, and I now have cataracts that will need surgery, but that’s not happening anytime soon. My eye doc says that I’ll eventually have trouble driving at night. I’m OK so far, but you might want to get your kids off the street before the streetlights come on. Sidewalk, too.

About two years ago, I noticed a slight bulging just to the left of my groin area. This turned out to be an inguinal hernia. Not everyone gets a hernia when they get older, but they’re much more common the older you get. At first, I had to make an effort to make it bulge, so I put off doing anything about it when I had the chance. Now, the bulging happens whenever I strain, cough or sneeze. When I sneeze or cough now, I cover my mouth with one hand and press in on my hernia with the other. I suppose I look kind of silly doing this, but I’d rather look silly than have the hernia get so bad that I need emergency surgery. I’m trying to avoid any kind “elective” surgery while I’m still under treatment. First things first. In the meantime, I’ve ordered a truss to hold things in until I’m healthy enough to get it surgically repaired. Truss. They’re not just for bridges any more.

I’m sure that I’m leaving out a few of the more minor complaints, but I guess everything is minor now. I’m grateful to be alive, and I’m grateful for my aging body, shocks and all.

About the picture accompanying this post: As I wrote above, I take my glasses off for just about everything. I’ve spent an inordinate amount of time trying to find them about the house and other places. This culminated in an incident last weekend where I panicked thinking I might have left them thirty miles away. It turns out they had fallen off my shirt and landed in the back seat of the car while I was stowing groceries. This was both annoying and embarrassing, as I had called my daughter and sent her out on a pointless mission to find them when they were at home all the time. Enter Peeper Keepers eyeglass holders. In the past I’ve associated these things with old lady librarians. Now that I’m probably older now than were the old ladies librarians of my youth, I’ve cast aside vanity for practicality. Besides, I figure they’ll look great with my truss and my ear trumpet.