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What’s it like, having cancer?

It just occurred to me that this is something most people don’t understand – what it is like to have cancer.  Thankfully, that’s the case. Although with stats showing that one in two men and one in three women will be diagnosed with some kind of cancer, I guess way too many of us DO know what it is to be diagnosed with cancer.

There are all kinds of cancer and all degrees of severity. For instance,  my stage IV isn’t the same as my friend whose stage IV lung cancer means that the cancer is in her liver, brain, and kidney.

Reactions Vary

We don’t all react to having cancer the same way either. Some of us put on our boxing gloves and face our enemy. Some try to befriend their cancer … I don’t know, that’s not one I can wrap my head around! Others hear the dreaded words and just kind of give up.

I am emotional this weekend because a list friend who has lung cancer is “rehoming” her 7-year-old daughter today. She already found a new home for her 6-year-old dog. Once her daughter is in her new home, my friend will begin to float from home to home, just waiting to die. If that doesn’t break your heart, nothing will. Can you even begin to imagine the anguish??? I can’t.

At the same time, i find myself frustrated with my friend. She had only one chemo treatment. It made her very sick. So, her oncologist told her there was nothing he could do for her. He told her to go home, get her affairs in order. And, that’s what she did.

This lady has a 7 year old … and a beloved dog. Would you just quit if your oncologist told you there was nothing else that could be done … after only trying one thing? Not me! I would have been on the computer, on the phone, in my PCP’s office … finding the next plan of action.

That’s essentially what I did back in July 2013 when I was told there just weren’t many options left. At least my oncologist gave me two options : a dreaded chemo or go into a trial. He didn’t say to go home and die. But if he had, it would have just made me fight harder. Maybe my competitive nature is a good thing!!! There is not a snowball’s chance that I would just give up.

 

 

 

Give up and not fight? Never!!!

When the place he recommended I go for a clinical trial wasn’t responsive, I went to my PCP and asked for a referral elsewhere. There’s no time to waste. That’s something you learn when you have cancer. Time is of the essence. And, when one door closes, go knock on another or another or another. Don’t give up. This is literally the fight of and for your life.

So, What’s it Like?

So, what’s it like, having cancer? You learn what you’re made of. You learn that you have strength you had no idea existed. Or I did. In my wildest dreams, I didn’t really expect to be so content, so joyful, or to feel so blessed while battling cancer.

That’s God. That’s my very deep and abiding faith. I am confident that He knows what He is doing. What my role is, in my opinion, is to live each day remaining as fully and completely as possible. I want people to see Him living in and through me as I go through this trial. I hope they do. Because without Him, this journey would be absolutely devastating.

There are lots of heartaches associated with having cancer. They go beyond the obvious ones that go along with the actual physical fight. Your strength and mental capacities diminish. It is very frustrating to know you can’t physically do what you did before or to know you should know the word you want to use, but can’t find it anywhere in your mind. It makes you creative! I often have to figure out a way to say what I wanted to get across with other words besides the one that would work best.

It is rarely discussed, except among others with cancer, but one of the harder trials those of us facing cancer battle is the disappearance of friends and loved ones. It is hard to watch life go on without you. It is especially hard when it seems you are totally forgotten most of the time. It is hard to realize that people you thought would be there for you aren’t. Having cancer is definitely an eye-opener when it comes to learning who your real and true friends are and who your good acquaintances are. It’s a painful lesson. For me, it has been the toughest part of this battle.

On the other hand, it makes those who have made it a point to stay in my life so much more special. I know that there are three or four people besides my family who would drop everything,  change their own plans, drive miles if necessary,  to come to my aid, if it were ever necessary.

 

I count myself one lucky lady knowing I have these people in my life. Many people I am in contact with feel that they lost all of their friends when diagnosed with cancer. Just when you need them the most. It feels like people think cancer is contagious. The thought appears to be, “If you ignore the person with cancer maybe you won’t get it.”

What to Say?

Of course, it could be that people just don’t know what to say. I surely do understand that. I have found that lots of people with cancer are super sensitive. They get irritated if you tell them they look good. But, don’t tell them they look bad, either!! Some people don’t want to be encouraged  (“you will beat this, you are strong…”) and others don’t want to be discouraged  (“my dad died of the kind of cancer you have”). Some people don’t want to hear that they are in a fight. The list just goes on and on. I have cancer and it seems like I am often stepping on someone’s toes by saying something they consider offensive. For instance, I like to say that life itself is terminal. Oh my goodness!!! Some people are really offended by that!

No wonder the general public shies away!! I don’t usually know what to say either!! I read today where someone gets upset when the nurse at her doctor’s office asks how she’s doing. Sheesh?!!! Is there anything innocuous enough that someone won’t be offended?

So, we cancer people complain among ourselves about being ostracized or forgotten,  but it seems like our over-sensitivity could be partly to blame. As for me personally,  there is little that you could say that would offend me. I am an open book … and I realize that it’s very difficult to know what to say.

I have taken the stance that I am going to live my life for as long as I have life. My first oncologist was taken aback when he asked if I had any questions after being told I had stage IV lung cancer. My one and only question, “Yes! Can I continue playing agility?”

Some people decide to put themselves into a cocoon when they hear they have cancer. A germ might find them. Me, I want to live my life.

There have been times when I had to be driven to class or a trial because my strength and stamina were so low. But, I was determined to go and give it my all (which wasn’t necessarily much). For me, it’s a matter of not letting cancer take my life before it takes my last breath. Wouldn’t that be letting it win before its time? Yes, I think so!!!

Here’s the truth. When I am playing agility, watching a movie, eating with friends, living, I frequently forget that I am different, that I have a very deadly cancer. I am just out having fun with my dogs and/or friends. Cancer, for me, is not my focus. It is a part of me, but it is not me. I like to say (and I believe), “I have cancer, it doesn’t have me.”

Thinking Ahead

But then there are the times when you are alone in your thoughts, when you do remember that you have cancer. It can be scary. When you think that maybe today is the day your treatment quits working and there’s nothing else to try. When your favorite oncologist has the tough challenge of telling you that there’s just nothing more to try. I can imagine how heartbreaking that will be for him.

I don’t go there often. It is depressing. .. what will become of my family, my two dogs when I am no longer here? I can only pray they will be okay.

I am not worried for myself. I take my last breath here and I end up in Jesus’s arms. But, what is the time between hearing there’s no more hope and drawing that last breath going to be like?

And, when you have a late stage cancer with a lousy prognosis making long-term plans becomes more difficult. I look to the future, but when it comes to planning something some months or a year away, I won’t make any cash deposits. Which, since I am outliving expectations, means I don’t get to do some things I would enjoy and would have felt fine to do. Guess I should be a bigger risk taker!!

I would love to get a new puppy to start training and loving. My two are aging. Cotton will be 7 next month and Barney will turn 6 in February. Unbelievable!! If I didn’t have cancer, I probably would have a puppy. But, at least at this point,  I can’t in all good conscious take on a pup. It is highly unlikely that I will outlive the two I have now, much less a new baby. So, having cancer means making choices you don’t want to make. At all.

When you have cancer, every ache and pain makes you wonder if the cancer has begun spreading. I had a headache the other day. Awful, sharp pains shooting through my head. I rarely have headaches. Oh no! Has my cancer spread to my head? That’s a common place for lung cancer to spread. (It’s also treatable when and if it does.) (Apparently, I just had a simple headache. A Tylenol sent it away and it hasn’t returned.)

I have a new cough. Yikes! Have the tumors started growing again? An elbow pain … did the cancer spread to my bones?

I am not a hypochondriac nor a real worrier, but every little ache and pain brings a momentary fear to mind … did the tumors decide to spread or grow? Fortunately for me, my personality is such that though the thoughts come to mind, they are fleeting.

Blessings

What’s it like, having cancer?

In many ways, I feel just the same as I always have. Sometimes, I will be in the midst of living and the thought comes rushing in, “wow! Look at you … you are doing [this or that] … with lung cancer!” It rushes back out as fast as it blew in. Thank goodness.

And, this will make some people think I am crazy, which I readily admit that I am, but I feel blessed and grateful. My life has gone places it would have never gone were it not for cancer. Certainly,  I would have never spoken on Capitol Hill or gone to a meeting at the White House.

And, wow! I have met so many awesome people that I would have never met if I did not have cancer. My life is much richer for having met these people.

I have had the opportunity to learn that I have a handful of true friends. How lucky I am to know that. I have learned, too, what it really means to be a good friend. I hope my friends know that I am there for them, no matter what, the same as I believe they are for me.

It can be scary, but it can be liberating. A lot of little fears I may have had before have disappeared. I was always pretty vocal, but cancer made me more so.

And, cancer has made me happy. When I wake up every morning,  I put my feet on the floor, get up, and begin a day full of joy. Cancer makes you appreciate the sunrise and sunset, the birds and flowers, the music of nature, the pure joy of another day.

 

Sure, there are the fears that are inevitable from time to time. Thankfully,  they are short-lived. Who wants to waste time worrying,  which changes absolutely nothing, when we can be living?

Cancer robbed us of my income, so financially, being sick has been an adjustment. We have to pick and choose quite a bit more than we did before, but the extra time I have available to enjoy life is worth the financial sacrifice. At least, it is most of the time.

I started this blog in hopes of telling my story for others who get this diagnosis. I think from the beginning,  even when I thought my time was going to be far more limited than it has been, I wanted to offer hope. Cancer doesn’t have to be the end of the road. Or, at least, we can strive to keep on living until we can no longer go on. There’s still life ahead!