Taking the Bull by the Horns and Advocating for Yourself

I got a post from someone new to the lung cancer world today. I was struck by how much smarter she is than I was when I was first diagnosed.

Trusting my astute PCP

After I was diagnosed by my primary care physician (PCP), I simply did what she told me to do. By the time she delivered the bad news that I had lung cancer, she already had an appointment set up for me with an oncologist for the next day.

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Finally, You’re Coming Back Home

You died on November 2, 2018. The Medical Examiner didn’t release your body for several days. Then, the crematorium has taken forever with you. But, finally, today, they called and said we could pick up your ashes.

It is so crazy. I feel so much better knowing you are “coming home.” You’ll ultimately be put to rest in the National Cemetery, but I am glad to know where you are for now. (And, I’ll know where you are when you are entombed at the cemetery, too, of course.)

I couldn’t explain where I am with all of this if someone offered me $1 million. What difference does it really make where your ashes are? I know, without a single doubt where YOU are – you’re walking on the streets of gold in Heaven – but it has been so uncomfortable for me not knowing where your ashes are … where what remains of you here on earth is.

The days that go by get harder and harder instead of easier. Maybe by picking up your ashes, I will start to settle back down a bit. Not knowing where you (your remains) have been has really been disturbing me.

So, I guess I will go get cleaned up so that Mom, Kim and I can go get your ashes. I don’t expect it to be easy, but I actually think at this point I am going to be more relieved than sad. I guess that’s the blessing of it taking them so darn long to get you back to us.

Two Weeks and Counting…

You’ve been gone two weeks now. And, it really, really still does not seem real.

But, maybe it is starting to sink in a bit. Yesterday, exactly 2 weeks since the day you left us, I was worthless. I just wanted to sleep all day. I barely moved off of the couch. Last night, I had the most fitful dreams and sleep as I have had since you passed away. Is my mind finally beginning to believe that we will not see you again until we, too, pass away and join you in Heaven?

Words Unsaid?

I’m so glad that you always said, “I love you.” And, that we said it back.

I have tried to think of words that were left unsaid … and because you were such a good and prolific communicator, I don’t think there were any. At least among those of us who love you most.

Should that be “loved” rather than “love”? I started to change it or at least put it like this, “love(d)” … but then I decided love is right. Just because you aren’t physically on this earth with us any longer, it doesn’t mean we don’t still love you, because we surely do. And always will.

I am so glad that you were a good communicator and made us better communicators. If you didn’t know we were proud of you and that we loved you very much, it is because you were not listening. The same thing goes for us. If we aren’t aware of how much you loved and appreciated us, we weren’t paying attention.

Frozen in Time

Like with your grandfather who died at age 49, just a few years older than your 43 years, you are frozen in time. Forevermore, you will age no more. The rest of us will get older and older and you’ll stay young (at least to those of us who think 43 is young).

I’m obviously just musing here with this post. Letting thoughts pour out of my brain and onto paper. They say it is good therapy. Maybe yes. Maybe no. But, for me, probably so. I write to get it out of me.

So, from what have you been spared by dying young? In your prime? What will you miss?

Well, of course, you will miss the time that would have been spent with Kim and with us. You won’t get to throw the ball or play tug with Ellie Mae any longer. You won’t be able to call or hug Mom and Scott or fellowship with your friends.

What You’ll Miss

But, there’s a lot of other stuff you will miss that actually gives my heart peace. Your ex-wife can no longer use you as her whipping boy. What a relief that is. She is (I initially wrote “was.” I changed it to present tense. She still IS evil. She just can’t use it against you) the cruelest person I believe I have ever met. You are now spared from her. And, for that, I am very, very happy.

When Dad and I were driving to the hospital, hoping you would make it, but feeling like you probably wouldn’t, there were two things I said to him. “If he doesn’t make it, he will be forever at peace and for that, I am very grateful.” And the second thing I said was, “Sara can’t torture him another minute.” Pretty sad that that was my second thought when thinking about losing you.

I’m really sad that she’ll probably come out ahead financially because you died. She doesn’t deserve that and neither do your offspring after the way you were treated by them. It frustrates me that someone so evil can benefit from you dying. One day I hope I can find it in my heart to forgive … but, even though I am usually good at forgiving, I don’t have it in me just yet to be at peace with that woman and her actions.

There is no telling what those children of yours are going to do before they reach adulthood. So far, they’ve pulled some very scary stunts, like taking guns out to threaten neighbors who they don’t like. With permissive schools and parents who don’t parent … there really is no telling what those children will do. l hope against all hope that they will not someday shoot up a school, but truly, it is my worst fear. They’ve been taught to hate and to manipulate and they’ve learned those lessons all too well.

Thank God, no matter what stunts they pull, you won’t have to see it. For that, I am very grateful.

Speaking of the Offspring

I do hope one day the kids will find peace. I know you and Kim attempted to take them to church where they could learn about Christ, but their mother made sure they scoffed at that.

I think one day, maybe not soon, but one day, those children will come to the realization that, in spite of your faults, you loved them as unconditionally as any person ever could or will. It was so unlike you to forgive and forgive and forgive and forgive, no matter how awful they were to you.

Right after you died, I wrote a piece, just to get it off of my chest, about how much your own actions toward your children reminded me of how God loves us. Your love for those kids was absolutely unconditional. Just like God’s love for His children. Sometimes I wished you could turn your back on them. It would have been so much easier emotionally on you.

I’m not as big a person as you. I hope for the best for those children while assuming the worst. If I never see them again, I’m just fine with that. In fact, it is my preference. They’ve been ruined by the person raising them. Sad, but true.

My loyalties were with you, When they treated you terribly, then I was mad at them. Your loyalties were with them. When I got irritated at them for doing you wrong, you got mad at me! Maybe that’s just how it is. We protect our children.

Who You Were

Aaron called you a Gentle Giant and I love that definition of you. You were as soft-hearted a person as there ever was. You loved deeply.

Your faith was strong. I have never personally known anyone who tried harder to live the life God wanted you to live. I saw you struggle so often, trying to understand what it was God wanted you to do. I just bet when you got to Heaven, you heard the words, “Well done, my son, well done.”

At the same time, PTSD and a strong (understatement) desire to be treated with the same respect as you showed others could cause some real anger issues. Unfortunately, the PTSD meant that you could go from 0 to 1000 in a split second. That’s a disease I would wish on no one. I have often said I would much rather have my stage IV lung cancer than PTSD.

You struggled with it so long and hard. You tried everything to control it and you mostly did. For that, you are to be commended.

Why?

You know, I have never asked God why He chose me to have lung cancer. I have asked Why He has let me live long past the norm with it. But, not why He chose me to have the disease.

By the same token, I have not and do not expect I will ever ask Him Why he took you away from us. My faith is strong enough to believe that He knows Why, His Plans are always perfect. As noted above, I already think I know some reasons “why” …

There is one thing that I have questioned God about many times, though. I have no answer and I don’t think I will ever understand until I die and can ask Him face to face. Hopefully, you now do know the answer. Why oh why did he allow Rodney to abuse you when you were a child? Why oh why did you not tell us right away?

We were trying to do the right thing and you ended up hurt so deeply that the pain never left, the anger never dissipated. If I am sorry about anything at all in my life, it is that we gave shelter and refuge to a child molester … even though we had no idea at all that he was or that he would ever, in a million years, hurt you.

Peace

So, you’re now at Peace. Perfect Peace. We’re not so much … those of us who love you and who are left behind. But, I console myself with your peace. As your mom, that’s so very important to me. Knowing that you are at peace gives me peace. And, I think that’s why I haven’t yet been inconsolable about your leaving us for Heaven two weeks ago. (That and I’m not sure I have yet accepted that you are truly and irrevocably gone.)

I love you. I always have. I always will.

 

 

 

November Begins My Month of Thankfulness

I generally begin November by listing, day by day, that for which I am grateful. Some days, the only thing that really strikes me is that I got up that morning or that the sun is shining. Other days, I have a long list of things for which I am thankful.

My reasons to be grateful

Some people think I am crazy when I begin to list the reasons why I am grateful for my current situation. It isn’t that I would not rather have never had cancer. No one is foolish enough to wish cancer on themselves or anyone else.

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Cooler Temperatures, Colorful Trees, and Plenty of Gratitude

I always look forward to October. It usually brings cooler, wetter weather to our parched city after a summertime of high temperatures and little rain. I love watching the trees change colors, even though in Texas it isn’t nearly as dramatic as it is in many parts of the country. Halloween isn’t my favorite holiday by a long shot, but I do enjoy watching the children get excited over it. October also means that two of my favorite holidays, Thanksgiving and Christmas, are just around the corner.

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5 Things You Can Do Even if You Have No Energy

Cancer treatments completely zap our energy. I get nivolumab treatments now and they do not leave me as exhausted as traditional chemo treatments did. But I remember being so tired I could barely lift one foot after another to walk to the refrigerator. Radiation treatments also took away most of my energy. I’m sure most of us have found us in this place.

So, what can you do when you’re physically exhausted, but you don’t want to just stare mindlessly at the television set? Here are five ideas that other cancer patients and I have found to keep us occupied and involved.

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Frustration Boils Over … One more Time

For some reason, every time one of my friends knows someone with lung cancer, they turn to me for comfort. I don’t really know why, except that they know I have “been there done that.” I’m very happy to help in any way I can. More often than not, the person with cancer doesn’t want to talk to me, but their loved ones do. I guess I give them some perspective on what it is like to live with lung cancer.

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Of Dogs and Men

My son died unexpectedly on November 2, 2018. He wasn’t sick. He was just here one minute. And gone the next. Let me tell you, THAT is a shock. Here it is, a week and a half later and I am still in complete shock. I am nearly certain that I haven’t accepted that he’s really gone just yet.

About the same time as my son passed away, an acquaintance lost her old dog. It was old and it had always been a mean dog. Not one that most people would particularly like. I’m not making light of the love the owner had for the dog; just saying that most others wouldn’t have felt deep affection for it.

Enter Facebook. Almost without exception, the comments from mutual friends to the person who lost their dog read as more heartfelt, more tearful, more broken-hearted over the less-than-nice dog dying than my son, a human being, passing away.

A World Turned Upside Down

The world feels pretty upside down right now … and those Facebook responses from dog friends didn’t help. Don’t get me wrong. Some of my friends have brought us food, a few have sent cards, and several have contacted me to be sure I am okay. The person who lost the dog posted about trees being planted in the dog’s honor, cards received, and it escapes my mind what all else. Two people who I met through my dogs have brought food and another one, who has also lost a son, sent me a card. No trees… No promises of attending his memorial service (after all, it will interfere with their dog sports).

Bitter? Maybe a little. Maybe this is grief talking. Maybe it isn’t. I have long had misgivings about how my dog “friends” react to a sick dog compared to a sick person or, in this case, to a dead dog compared to a dead human being. Somehow, the dog generates deeper, more heartfelt emotion and I just.do.not.get.it.

I love my dogs. I do. They give me great comfort. They make me laugh. They fill me with peace. They give me something to do – walk, play agility, tug the toys, or just cuddle on the couch. They give me a ton of love. My heart nearly explodes with love for them.

Dog vs Man

But, the pain of losing a human does not compare to the pain of losing a pet. Here are some of the reasons why:

  1. When we get a pet, we know that we are going to pour our hearts into them (and them into us) for 15 years or so, if we’re lucky. They just don’t have a long lifespan. I wish they did. It hurts like hell when they die. But, when we get them, we know that we will likely have to say goodbye to them one day (unless we’re old when we get them).
  2. Not everyone is like me, but when I lose a pet, I rush out the next day or within the next few days and get another puppy or kitten. I cannot bear the pain of losing them, the emptiness of the house without the beloved pet that passed away. The new pet doesn’t take the place of the one who died, but it does help feel the void. It gives me something to love. It gives me new joy and laughter. And, so begins the next 15-year or so journey.
  3. I had one child. I carried him in my belly for 9 months. I loved him before he was born. And, I loved him every day of his 43 years.  The expectation has been that he would bury me, not that I would be tasked with not only birthing him but also returning him to his Maker. That’s backward.
  4. There is no running out and getting another son. Not today, not tomorrow, not ever. That hole, that void, that inconsolable sorrow can’t be filled by anyone else. There will never be another child in our life. There will never be another son in our life.
  5. Life will continue without my son just as it continues without a lost pet. But that great big black hole right in the center of me will never be filled by another person or another pet.

It’s Hard, losing a pet

I  totally get how hard it is to lose a pet. Over my long lifetime, I have lost a bunch. And, believe you me, I have shed many an inconsolable tear over them when they go. But, I knew when I got them that I would someday suffer through their loss. No one gets a pet that doesn’t know they’ll have to one day say goodbye, hopefully later rather than sooner.

But, I will never understand, not now and probably never, how people have more compassion over the loss of someone’s dog than they do over the loss of a child, even if that child is an adult. It is hard to know what to say or do, I guess, but they seem to know what to say and do when a dog dies.

Is this backward only to me?

 

 

November is Lung Cancer Awareness Month

Everyone knows that October is Breast Cancer Awareness Month, but we keep the fact that November is Lung Cancer Awareness Month a better secret. Unfortunately, the flood of pink will not be replaced by a flood of white (the color assigned to lung cancer) on November 1.

But, we can all do our small part in helping raise awareness about and funding for lung cancer during November (and throughout the year). It is important that we get the word out about this deadly disease. Lives are depending on it!

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Lung Cancer Awareness Month – it’s here again!

I always look forward to November. I love this month. Temperatures are mainly cooler … and when you live in Texas, that’s a very good thing. We are scorched for way too many months out of the year.

Thanksgiving is one of my favorite holidays. I love the food (we go traditional with turkey, cornbread dressing, green bean bundles, sweet potato casserole, mashed potatoes, a family tradition of banana salad, corn, pies, yum!). I love the whole idea of concentrating on what we’re thankful for – purposefully thinking about what’s good in our lives, even things that don’t always seem so good.

Our family is very patriotic and many of my family members have served in the military. I love to celebrate Veteran’s Day and the USMC birthday and the day my son graduated from USMC boot camp.

And, it is Lung Cancer Awareness Month. It probably drives people crazy, but I post every single day something about lung cancer for those who are my friends on Facebook. This year, I’ll be also posting something to the WhatNext pinboard. Everyone there has been touched by cancer of some kind so maybe it is overkill, but I’ll do it anyway.

Six years ago, November was a month full of firsts for me – first PET scan, first visit with an oncologist, first biopsy. I guess those aren’t firsts most people want to experience. Nevertheless, November of 2012 was full of those things for me. Lots of new memories. They seem like so long ago now.

So, I celebrate November and all I love about it. And, I celebrate that I am here another November to enjoy all that I love. I am among the lucky ones. I don’t know why and I am well aware that one of these days my time will run out, but until then, I thank my God and carry forward.