Effects of Radiation and Chemo

I never thought I would actually be writing about this. The effects of radiation and chemo...no one really wants the down and dirty of cancer treatment. But there is so much doctor's can't tell us about living with disease and how it's going to affect, not only the person who has the illness, but their family and friends as well.

Anytime the feel goods go away, we shrink back, re-think what we should or should not say or do, and begin to isolate ourselves.

Once we reconciled the fact we were going to have to deal with cancer treatment, we thought we understood what that meant. How can we know, when we've never done this before?  I think it's easy to try and identify with what we've seen in media, or heard about from others. But it's nothing like what we thought.

Everyone has a different and individual experience with treatment. Not only because every body is unique and reacts differently, but because the cocktail of poison, it's exact dosage, and the type of drugs used and how they are delivered, levels of radiation administered without or without chemo, depends on each persons DNA, age, weight, size, type and stage of cancer, where in the body the cancer is located, and whether it has moved from that original location or not. The processes for treatment may be similar by types and stages of cancer, but the exact way they go about it is much more individualized than we were aware of.

This individualization is what makes it wonderful and difficult at the same time. There are enough similarities with radiation and chemo treatments to generalize them to: Hair loss, nausea, loss of appetite, weight loss, depression, fatigue... which is exactly what the doctor's told us to expect. We weren't surprised by these at all.

What is more surprising are these: constant head aches, blurry vision, unable to think clearly, feelings of despair, anger, loneliness, fear, self pity, repetition of thoughts, confusion, ranting, fantasizing about the future, delusions to some degree, thinking you can do more than you can, sleeplessness, too much sleep, constipation, isolation, not wanting to see anyone or do anything, unable at times to relate to the world outside, self centered ideas, thoughts and actions, day to day ruts, loss of intimacy, loss of strength, insecurity, and the temporary inability to get past the negative spiral of how  sucktacular this all really is.

There are probably many more. But the point I need to make here is that the above feelings and actions are not only attributed to the person with the illness. Spouses, care-takers, other immediate family members, and friends close to the situation, can all experience these exact same things. Definitely not the most glamorous parts to talk about. But it's the reality.

When I re-read the negative emotions and actions above, the psychoanalyst in me thought, "Well of course, he (you) feels this way. Who wouldn't?" And then..I realized that I have heard this before. "Of course, yeah...uh-huh. This is expected"...but not openly talked about because it's so HARD. 

These two thoughts war with each other in my mind rather constantly. This one: "Of course I understand this is difficult and no one really expects me to be okay all the time. There is room for other people to have patience and understanding for me and what I am going through right now."

On some level I know people expect me to not know everything, have it all together, and need other people to help me. But I am conflicted, when people pay this compliment, "I don't know how you do it. You seem so together." So if I say, I'm not...will they be disappointed or relieved? It's a lot of pressure.

And this one, where people show me on a daily basis they don't understand what I am going though at all, are not there for me, cannot see me, and tell me in many ways, "Yes, we know you have needs to, but you aren't the one with cancer."

So, because I'm not sick, my needs suddenly don't matter anymore? This doesn't make a lot of sense. 

When did this become a contest? Oh yeah, back there at I'm not the one who actually has the disease. I do get to live with it though, which is somehow not as hard or difficult or tragic as actually having it. But only because of the perception. I was right there, with the rest of you, in that thought... right up until this happened to us.

I swing back and forth between minimizing my own feelings and feeling guilty because I don't actually have a physical disease, but needing what I still need.  I feel all the same emotions and struggle with this every bit as much as I see my husband struggle with it all. It's a constant tit for tat in my mind, if I let it. So I try not to.

It doesn't feel good to be angry because your spouse is sick all the time, can't do the things they once were able to, engage in conversations like they once did, or even be intimate without or without sexual contact. None of this is his fault, so therefore I shouldn't be mad. Right? I just shouldn't be mad at him? Right?...If I am mad, then maybe there is just something wrong with me?

See this negative spiral and where it goes? I need to be able to feel how I feel, without having to justify it all of the time. Even to myself. This is all really hard work. Understand, I don't want to be mad, I just am. Because this is not what I expected, wanted, or asked for...whatever.

We didn't ask for this. I don't want to be changed, or have my husband changed. Okay that part's not totally true...I always wanted him changed a bit, but more like in Cinderella with the pumpkin or the glass slipper. Polish the rough edges, a bit. Not an extreme makeover...

Most people don't know to ask, or even think about all the changes that are occurring within relationships when one person becomes critically ill. I had no earthly idea all the things that would change, temporary or not. I didn't know I would end up feeling so angry and vying for attention and affection on top of it. It feels like a recipe for disaster and it IS!

Like a train wreck you can see coming, you know it's going to be horrific. You're unable to turn away and it's completely traumatizing when you see it. You feel helpless to do anything to stop it...all the while knowing you will have to return to whatever you were doing before this all happened. But you're not the same and can't quite be the way you were before. No one who did not live what you just lived, will understand why you can't just get over it. Because there are a thousand pieces, re-telling the story leaves out. And not on purpose...

It's not easy to admit, there are strains, losses, and unpleasant issues that you can't really be prepared for or even see and easily recognize. Knowing things will be "hard" or "difficult" seems to generalize what is happening in the same way people say raising teenagers is "hard" or "difficult." Everyone has a bit of a different experience and just how hard or difficult it is, really is up to the individuals in the situation and their own perceptions and expectations.

I expected treatment to be hard for him. I had no idea just how draining, emotional, and scary it would be for me. The guilt of having some of these feelings, is enough by itself to make me want to stay in bed and hide every single day.

But I don't. I do a lot of other not so great things, but I'm not hiding. It gives me a sense of belonging, when I write about the extremely hard things, no one else says. I think because of this, I force myself to keep going, just to see how it will all turn out on the other side of this.

When I go back to one of the first articles I read about what I needed to know about my spouse having cancer, one of the first sentences began... "It will change every relationship you have. Every one."

I didn't realize then, how much that would apply to my marriage. I must think there is Teflon on this thing. I knew it would change it, sure. But the extent to which we have been forced to grow, change and learn in such a quick amount of time...Boy Nelly! I wasn't quite ready for that.  I somehow missed the "every one" part of that statement.

It should have been followed with "THIS MEANS YOU!"

I've talked to many different people whose lives have been touched in some way by cancer, brain tumors, and other serious, long term illnesses. The common thread is how hard it all is, for everyone involved. But hard for different reasons.

There's something about me that requires my learning to take place in big chunks, with many things happening all at the same time. Not sure why, except that I am one of those people who have to be hit by a mack truck to get it...and so it goes.

I think the lesson right now might just be letting go, and not expecting that I have to fix anything. Things are as they are, and there is nothing for me to do except, as my friend Catie says, "learn to surf the waves."

Some people get sick...others arrive sick. Some recover, some don't. Others never feel sick a day in their lives.

I think for Scott, he has never really felt or understood being sick, until now. He's had colds. He's been down and out. He's broken a bone, had a few bumps and bruises, even been stabbed before. But nothing compares to this.

Before when he felt ill, he knew he would get better and recover completely and quickly. Brain cancer brings him to a whole new level of sick and tired that he's literally never experienced with anything else. He has physically and emotionally lost part of himself that he will never get back.

He told me he can't look himself in the mirror because seeing the bald patch from radiation makes him feel horrible. So on top of feeling physically sick, he now feels emotionally sick too. He looks down whenever he's in the bathroom, so he can avoid the mirror. I know this is temporary and the hair will grow back, so does he. But right now, in this moment, it's hard to see past what's missing.

These are the things we take for granted and don't realize...what you think doesn't matter, actually might. He never really cared about his hair before, he thought. Never admitted how it enhanced his looks. Now that it's falling out in this weird pattern, he can't look at it because it makes him feel "less than."  Nothing has ever done that to him before in his entire life.

Some of this has reminded me of when I was pregnant the first time. I mentioned it to Scott yesterday. He recalls me being "horrible." I was moody, tired, emotional...uncomfortable, couldn't sleep well, didn't feel like walking sometimes, couldn't eat the way I used to, I had nausea and heart burn, the smell of certain foods made me sick, and I felt as if I was just a shell being used for some other purpose beyond all of my control.

He had to remind me to eat, force me to walk, literally help me up out of bed or chair. He had to regularly attend doctors appointments that weren't at all about him. He endured the smelly gas, the crying, and the whining because of this or that...in his mind it was a 9 month hell. But at the end was this beautiful baby, whom he says is "completely worth it."

He used to say motivational things like, "suck it up, get over it. Don't worry about it, you're beautiful, yada yada..." All those platitudes he gave me, the ones he thought were so helpful, seem so insensitive to him now. I gently reminded him of course.

Learning empathy is a really difficult thing to do. Sometimes we just simply cannot understand until we are literally standing in the same places, going through something we never thought we would have to.

I can't begin to say that I understand what Scott is going through personally. I can, however relate to how hard it is to feel motivated to do anything, when your entire body is screaming at you because it hurts, is tired, and feels entirely different inside and out. I remember feeling so worthless and crazy when I was pregnant, because I couldn't think straight, and I knew it but couldn't control it. All I wanted was for my husband to understand just how difficult it all was for me then.

But not like this.

The difference is that there is not a beautiful baby at the end of this one. There is something, but it's not exactly tangible. Hope. It's growing and becoming so much more evident in our lives because of this experience. I am sure we could have learned these lessons many other ways, but we don't have control over that. We can only control what we do with it from here.

I try to have the same compassion for him now,  I wished he would have had for me then. I don't always succeed. I fall short of being the perfect nurse-maid-wife-mother-friend. I understand, more now than ever, why people can't always be who we want them to be, when we think we need them to.

I find I have more understanding today,  because I do fall short of being who Scott needs me to be right now.  I can only show more empathy today,  because I live on both sides of needing it and giving it; mostly finding myself in the position of simultaneously requiring empathy for myself and needing to give it to others, regularly.

I had no idea the effects of radiation and chemo would end up teaching us more about compassion and empathy. Even when it's the hardest, hope shows itself to me through new eyes. Scott and I are connecting in ways I didn't know we could. In small ways like joking about his weird hairdo...and in feeling his pain when he says how much he hates it.

With our insecurities and all, radiation and chemo are helping us find out how to simply appreciate and show more gratitude for the other person in this world willing to tolerate all our imperfections.

And keep working on a life together...

Don't Put Down Your Rifle...

Cancer. It's a word no one wants to hear. It's the equivalent of saying to my hunter, "Game and Fish has your spot closed to hunting because the soil tests in the area came back positive for radio activity." No hunting this season.

Wait, wait, wait....What? "For how long? Is this going to be permanent? Can they fix that? Will we have to find another place to hunt? Can we find another place?"  Everything about the way we hunted, before, has changed. Everything we thought we knew, is now questioned. Suddenly, without warning, our season goes from a sure thing, to a maybe because of something completely out of our control.

I don't know if this hunting analogy works for everyone, but it certainly rings true for us. For years, our life revolved around hunting seasons. Not just hunting, but fishing, camping, any outdoor activity that required hard work, determination, and some good ole' fashioned gumption. Being prepared is a must. Knowing exactly what tools and equipment you 'll need, just in case, is essential for a good outcome. 

Brain tumor world is really not that fun and there is really no way to prepare for it. It can literally suck all the life out of you, if you let it.

How do you keep going, when there isn't much to look forward to day to day? There's the nausea, the constant headaches and swelling, not sleeping, or eating, some weird oily discharge you can't explain, not being able to fully control your emotions, people wanting to help but not being able to tell them anything to do that will make it better, watching your hair fall out in patches, taking poison that comes in a bio-hazard bag which you have to explain to your kids to never, ever touch, wanting to go places and do things that you used to enjoy very much, but not having the energy it takes to sustain those activities...then feeling angry and sorry that you can't do the things you used to or feel the same as you used to...and all you want is for things to go back to the normal you knew before all of this.

How do you keep going when your world is upside down and literally closed to hunting?

You take some deep breaths. You force yourself to smile, even when you don't want to. You recognize beauty in your home, your family, friends, in your neighborhood, wherever you are. You take notice of the tiniest of things that are good and make yourself recall what it feels like to not be sick, tired, hopeless...You listen to music that makes you want to dance (even if you can't), you sing, write, watch your favorite movies, you get outside and breath fresh air (even if only for moments at a time).

Most importantly, you keep preparing for when hunting season will be open again. Whether hunting big game or hunting for hope, it's the same. If you put your rifle down, and never pick it up again, you stop taking care of your gear and equipment, reading up on the latest tactics and best hunting practices, when the season opens  again, you lose interest, will not be ready, and are more likely to pass on the opportunity. The greatest hunters I know, know that when hunting season ends, this is only prep time for the next. They don't stop hunting, they just keep on making plans and getting ready for next time.

Same with hunting for hope. You will need to read blogs, books, articles, scripture, tumblr, memes, whatever little quote people are posting on social media about hope...Copy your favorite on post-its and stick them everywhere around your house. Keep talking to people who can really inspire you, who make you feel like you are up to the task at hand. Let your friends come to visit and take you places. Let others remind you of who you still are to them. Keep a gratitude journal. Write negative feelings on pieces of paper and crumple them up once you're done, or better yet burn them! Surround yourself with happy thoughts, people, and events. There is enough negativity in the everyday, that if you don't force yourself to focus on something positive, you probably won't.

Finding reasons to be happy and hopeful the in the midst of a crisis of any kind is really hard. But so is just about everything else in life. Giving up when things are at their worst, when the struggle seems to real to keep on trying, is just the same as saying, "Well, they closed the area, so no need to hunt anymore." Would you throw away all of your guns, ammo and gear?

Well, would you?

Duh...you'd go find another place. No,  it will not be the same and you won't know this new place like you knew the old one. But there is a possibility that things will be better, even more accessible, and open to hunting in a way you never thought possible before.

THIS IS HOPE MY FRIENDS!

Pick up your rifle!! Heck, sleep with it if it makes you feel better.  Keep it oiled and ready. Make sure all your gear is ready to go. Have your bag packed, filled with food, and all the essentials. Because when it opens again, or you find an alternate hunting ground, there will be nothing to hold you back from going out and getting what you are after! You will be much more likely to say YES when the opportunity presents itself because you are ready.

How does this make things better?

I know. How can it be better when cancer is taking over or even threatening your life? Nothing about that is better or good. Nothing. What we've been learning is that it isn't about the brain tumor, the effects of radiation and chemo, or the loss of a career. Its about the life we're still able to live, in spite of all of that. It's taught us that the relationships we have with one another are much more valuable than the job, our health, or any other thing.

Material objects, things and circumstances come and go. Health is not always in our own control. The things which are constant and that remain with us forever, are those tied to emotion. What we think, how we feel and make others feel, what we know and learn, how much we love and are loved...these are what we take with us through life and beyond. Nothing else.

Don't put down your rifle because hunting season might be over for now. Keep it ready. Make yourself ready for when the new season of hope arrives. It takes a lot of effort. It is purposeful, not accidental. Keep yourself going by letting yourself feel good, even if it's just for moments at a time. Sometimes, it's the smallest moments that keep us from falling totally off the cliff into total despair.

Find your happiest memory and re-play it over and over again. It doesn't matter that it isn't where you are right this very second. It matters that it happened, and you were there to experience it at all. Find one reason to laugh. I promise it will help. Do it.

One of the things that keeps us going the most right now is laughter. That, and holding the rifle upright.

Ready, aim...fire. Hope is like that.