Getting Your Life Back

[bware21]

If I say something here that causes distress to anyone please bring it to the attention of a Moderator and request that the post be deleted -- I won't be offended. Same goes for anything else I might post (or have posted in the past).

-------------------------------------------

From the moment I found myself in this battle with lung cancer, life as I knew it ended ... poof! Like God reached down, snatched it up and tossed it in the trash can -- no warning, no time to prepare. And from that day to just a couple of days ago I've had a hard time even recognizing myself. The old me effectively ceased to exist.

And how have I handled this new life of mine? I have to say, not as well as I'd hoped, but better than I'd feared. I spent a lot of time reading and looking for inspiration, mostly in the realm of ancient history. I wanted to know how people I admired died and what they did, or how they thought, to ensure that they died with dignity. The acceptance of death and empowering myself with the ability to exit this world with dignity became my goals, at the cost of just about everything else.

Why is dying with dignity so important to me? I'm sure there's some vanity involved somewhere, but mostly it's because I don't want the cancer to steal everything from me -- it can kill me but it can't destroy me, so to speak. Also, the result will be the same so why put family and friends through the trauma of a pathetic dying process? Bollocks to that.

Of course, when you're not in any serious pain it's relatively easy to think you can die with honour. But what about when the body suddenly becomes an unrelenting enemy, inflicting pain like some medieval torturer? Will I become a whimpering coward when that happens? No idea, but the possibility can't be ruled out. I can only hope not. For what it's worth, not all of my heroes died with dignity -- though some did, and my hat's off to them.

Anyway, my life over the past four months or so has been utterly consumed with death, death, and more death -- from how to die, when to die and why to die. Within that bubble of self-pity I've experienced feelings and emotions that are quite alien to me. For example, I figured out the other day that throughout my entire life I've cried just three times (for me, crying is defined as shedding more than one tear). I cried once when my father beat the crap out of me. I cried when I left my kids. And I've cried over this. Always in private, like most males, and never for more than a minute or two. Rather silly really, because I always feel much better after a really good sob, albeit momentary. A damn shame we men don't do it more often -- it's good for the body and good for the soul. I've never understood why I didn't cry when my Mother died of cancer, but I didn't -- even though I spent over two weeks at her bedside.

When I first came to this Web site I had no intention of writing anything. I thought I'd just cruise around and seek out good news for myself. I found some, but not as much as I'd hoped -- I guess I wanted to discover that everyone was doing just fine and lung cancer was not really any worse than a bad case of the flu. Bit of denial there, I suspect.

When I finally wrote something it was for me, as a mechanism to express myself and relieve some of the pressure that was building in my brain. I didn't care if anyone liked what I had to say, or not. It was helping me and that's really all that counted. Then people responded, and for the most part the responses were positive. But who were these people?

I started looking more closely at this community, and pretty soon the good news I was looking for started to reveal itself -- not so much in the statistics, but in the spirit of the people themselves. There are so many inspiring stories here that they put my self-pity to shame.

I don't help people here with practical information because I don't have any to offer, and even if I did I'd be useless with it. When it comes to the data, I take but give little back. But I do continue to write stuff, and if my "stuff" gives just one spouse a clearer insight into what it is their husband is dealing with then that's a good enough reason to continue. Is what I write self-serving? You bet it is -- but there's more to it than that.

And what is it I'm taking from people here? The following post from Connie B is a great example of how a little input can make a huge difference in one's life:

"Many MANY people do survive SCLC. I also know a lady who is a 16 year extensive SCLC survivor and she is STILL cancer-free and doing very well. This is BEATABLE!"

What more do I need to say? These few words yanked me out of my death trip, and for the first time in months I'm able to see a future for myself again. Will I be lucky enough to survive 16 years? Who knows? What's important here is that someone has. And if just one person in the world has done it that's good enough for me.

I think I just got my life back.

Bill

[Kathleen1]

Bill this was beautiful. You have a really great way of expressing yourself. I am pulling for more than 16 years for you. Lots more. You are just the guy to do it too.

[mary colleen]

Bill,

My sense of what you are saying is that worked through a great deal of this, and feel you can move forward now, operating under the premise that the hope that is out there can be yours, too. I think that maybe you instinctively followed an inner process that is actually logical and necessary: you dealt with the worst-case aspects of the illness by facing them head on (i.e., doing your reading, etc.), then compartmentalized all of that to a place that allows you to live your life and fight your fight. If so, good for you - that's a big job, and a big accomplishment.

mc

[Connie B]

LCSC's very own CindyRN is a long term Ext. SCLC Survivor. I believe she is a 4 or 5 year survivor.

Lois (who is the 16 year SCLC survivor) is a Realitor and she is still going strong. I met her 8 years ago when I presented her with an award that ALCASE had going at the time. MOMENTS THAT MATTER.

They had asked LC survivors to write down on paper what it was like being a lc survivor. I won the first Award and she won the 5th and she lives here in Minnesota, so ALCASE asked me to present her with her Award. She is a delightful lady and she lives each day to the fullest. She is a wonderful inspiration.

My other friends, Janet and Melanie who are 7 and 6 year SCLC survivors. (EXT. SCLC SURVIVORS). They are both doing well also, and DonnaG here at LCSC also knows Janet and Melanie. Katie met Janet last year and Janet is a soon to be 8 year Ext., SCLC Survivor come May and Mel will be a 7 year in June. They are also cancer free.

I think the first 2 years of being a survivor are the hardest. We go through so many emotions and the fear is overwhelming at times. But, after that two year mark, we tend to learn how to enjoy life again and we learn how to live all over again.

I know the first two years after my dx.s I lived like I was dying and I was very concerned about how I would die, and when I would die. That was way to much wasted energy thinking that way. It's so much nicer and easier just enjoying each day and counting each day as a blessing. I use to make a job out of worring and planning my death. Now I just live one day at a time and count my blessing each and every day for a good day. I'm just to busy living to worry about dying.

As one of my dear friends who lost his battle to LC use to say: "It's Another Great Day To Be Alive" And that it is.

[hockeyma]

Bill, that was wonderful. I believe you missed your calling. Your depth and perception is a blessing. I look at my husband in the last few days - seeming so quiet and accepting in his faith and I wonder what rolls through his mind. I believe you have opened the doors for me. Thank you

Heather

[bware21]

Thanks Connie,

A heck of a lot of people here have helped me, with the understanding and the science. But to see your post showing 16 years of survival made a huge difference -- so big of a difference, in fact, that I couldn't even begin to explain it.

I've no doubt some may think he's kidding himself if he thinks he'll make it 16 years, and that's okay. What's really important here isn't the duration but the quality. My problem from the onset was grappling with this nightmarish vision of the rest of my life spent thinking about it and worrying about it. If that was to be my reality I'd probably stop the chemotherapy in a heartbeat. Life is much to valuable to have it thrown away in a trash heap of my own making.

I'm holding onto that 16 years like a gold brick and I ain't letting go.

Bill

[ztweb]

Bill,

Again, I repeat, you are so eloquent! Connie B....thank you for your posting as well. Me and my little pity party from my other post needed a slap in the face, and you gave it to me (with a light hand-of course ). The hope, the spirit, and the peace from this site are amazing!

Jen

[bware21]

Heather,

As introspective as we might get, there's always room for hope, and good news might just be lurking around the corner. Don't ever give up, and I expect you guys to join us in our next collective prayer meeting. Teri and I will be saying a prayer for you regardless.

How's Gerry doing right now? Is he still painting?

Bill

[Connie B]

You go right ahead and hold onto that 16 year gold brick. We all need something to hold on too.

Let me share a ture story with you.

About 7 years ago, a man named Jim walked into our In-Person LC Support Group. We had been dx.d with Ext SCLC 28 months before he walked into our group.

He told us that the last 2 years he spent traveling around the world. He said, he went around the world TWICE, because when he was dx.d his doctor's told him he would live about 6 to 8 months. So, he figured he would enjoy the last 6 or 8 months of his life and travel the world. He said, "I made it around the first time, and then I went the second time, and NOW I'm out of money and looking for a job" (but true) Last I saw him which he came to group about 3 times after that, he was STILL CANCER FREE and he wasn't happy he had to go back to work.

My two cents to all that is, We learn to Never say Never. A lot of us were given months to live, and low and behold, POOF, here we are years later.......

Someone has to make up the Survivor side of the statistics and it may as well be you and I.

[Littlegirl]

So glad you got your life back. I understand wanting to die with dignity but your loved ones will be by your side no matter how you die. Do you love your mother any less because of the way she died? Your a very dignified man and people will remember that about you when you are gone. And yes I do believe that is a LONG was off!

I'm glad you are in a better place and ready to live life your life again. I think your posts have helped more people than you will ever realize.

Karen

[bware21]

Karen,

I have to say, that really made me laugh:

"... and people will remember that about you when you are gone."

That's as far as I got before my heart skipped a beat. Thanks for not ending your thought there.

Bill

[Don M]

Thanks for your post Bill. I always read your posts as does everyone else, I am sure. I am glad you have found a way to deal with carrying the lc around with you.

For myself, I don't mind dying...someday, I just don't want to have cancer. I guess having cancer kind of rubs my face in the subject of death and dying. Mostly, I keep it in the background though. I am alive and feel good now and that is enough.

Don M

[georgesalley]

Bill,

At the age of 17 I volunteered for the Army, became a Paratrooper, and went off to War, as it were.

I never considered death then, and certainly do not now. To use a crass statement, “there is no profit in it”.

Life is to be lived as it comes, the bitter with the sweet.

Cheers,

Geo

[bware21]

Don M,

I've always considered your profile and your posts as an INCREDIBLE window into survial. Simply amazing.

Bill

[ernrol]

Bill,

My day is made every time I hear that some one is getting more positive. I am glad that you have that 16 year outlook, although I will continue to do what ever I can to get you out of that short term goal. Let’s see, there is some one out there that has survived for 16 years with their initial treatment that is now 16 years old. Since there are so many new drugs and treatment now, plus more on the horizon, I would say that we could at least double those 16 to 32 years and maybe more. You probably will not die of cancer at all. You had better watch crossing the streets, your chances of getting run over by a car might be greater than dieing of cancer.

Stick at it and you will get as nutty as me. I was concerned of having a heart attack last Sunday from trying to run a half marathon that my wife said I shouldn’t be running. She was right. I was running the Thursday before the race and I got this thought, "Ernie you can't make it for 13.1 miles you have not trained enough". Then I got another thought, "you're right you can't, but I can". I am not satisfied with finishing last Sunday. I have already started training for next year.

I figure between my motorcycle, airplane, and running half marathons, maybe cancer is the least of my problems. Just kidding, I do want to live life to its fullest and help as many people that I can by giving them HOPE and keeping them positive.

You said that you have only cried three times. I guess I can’t count the times, but it isn’t a whole lot. I do get teary eyed a lot of times. Sometimes it only takes seeing the flag go by. Or sometimes when I read something that is good. I was trying to find a good definition of Hope and I came across this site: so on this I will quit for now.

http://www.geocities.com/lorisgarden/Hope.html

Stay positive,

Ernie

[bware21]

Hey Ernie,

Thanks for the words of encouragement ... but the thought of being in my eighties is more than a little depressing (there's just no winning). That was meant to be funny, by the way -- so anyone in their eighties, please disregard.

Great job with the marathon, though no idea how you managed it.

Bill

[j's girl]

Bill, this is the way I've always looked at survival stats. There is always a percentage of people that come through it and survive long term. Regardless of what that number is, it can always be you .

Shauna

[Snowflake]

Bill,

I, for one, find your post depressing. You may ask why, and even if you don't, I'll fill you in...

I did NOT get "MY" life back. I have a life I am making mine, but it sure is taking a lot of work. I've NEVER had memory problems, never weighed this much in my LIFE (and that includes when there was another human hanging out on the inside - I passed my full-term pregnancy weight 50 pounds ago!), NEVER had bad skin, NEVER felt so tired all the time...

BUT, I AM alive to witch, and I do that very well, thank you...

I have a different life, a new normal. I don't whine and I don't feel sorry for myself. I don't usually think about death, but sometimes, that monster gets loose in my head and does some real damage. One of my favorite phrases for this whole battle is simple - "Put on your big girl panties and deal with it". I share this wisdom when I feel it is warranted, and some days, I dress up and have my own little pity party. Unlike my buddy, Fay A., I do NOT invite others to join me - but I do set a time limit like she used to. Maybe I need to continue in her footsteps a bit and have a pity party and invite everyone...that's a thought (I'll have to get back to that when I've bought decorations).

I thought surgery was extremely painful. I spent nine days in the hospital while my doctors tried to get the pain under control - but it was NOTHING compared to the mental battle. I don't remember the face of every monster, but I remember there were a lot of nights that I didn't sleep.

When I first got home from the hospital, I was afraid to sleep - I felt I would die before I woke up. What I found here, was that I was not the only person to feel that way...and it helped.

I fight back monsters under the bed. I've been fighting them steadily. Sometimes, they get out, other times, I get the high ground with my Louisville Slugger and Million-Candle-Power Mag Light. I remember from childhood that a flashlight under the pillow can keep the monsters away...

Unlike you, I've been here a while. I don't have to read the profiles to know how the battles went, I walked right alongside my valiant friends. If you think reading about it is hard...well, living it is a special kick in the teeth. Not only are you sad for losing a friend, the VERY next thought is often "am I next?"

It's scary, the road is fraught with hazards and the monsters pop up when least expected. Our best plan is to hold hands and stock the batteries, and keep going forward - for no matter what, time marches on, waiting for no one.

My friend, Fay A., mentioned above, told a story once about her childhood. She was out with her mother and saw two old widows walking side by side with their arms around each other. She asked her mother why they did that and was told that alone, they would fall, but when together, they held each other up. She was always good at bringing in a story with a lesson that fit the discussion...

So, Bill, just lean. I'm the goofy looking one - I'm wearing my big girl panties, carrying a bat and flashlight and sitting on a saddle - 'cuz I'm scared to death, but I'm saddling up, anyway.

You're in a good place, glad you happened upon us and decided to stay a while. Are you coming to my 98th birthday party? There's supposed to be a wet t-shirt contest, arm wrestling with bikers and a beer truck...

[barbara5452]

As I read your post my eyes welded with tears and I found myself in a good much needed cry. We try to stay strong for the others around us with our heads in the sand only to not upset the ones we love around us, but yes we feel afraid, angry and sorry for ourselves and wonder almost continuously about the cancer, how long we have, and how to prepare the ones around us. Yet just as you said someone will post something and it gives us the uplift we need just as we need it. This is a wonderful site, and Bill you are wonderful for speaking what we all feel.

Thanks

[ztweb]

Wow! Snowflake....amazing post! I LOVED reading this. I plan to copy and send to my dad! You are amazing. What eloquence you write with (you and Bill come from much the same mold in that regard )

Bill, thanks for making this post, as I learn so much from the many voices (computer voices, that is) of cancer.

God bless,

Jen

[RandyW]

Love it or Hate It!?!? I Love It. Bill I think I know what Deb ws thinking about in the days leading up to these. ! Year ago htis week I laid her to rest after 3 years of fighting and Nearly 10 years of a wonderful Life together. Some times I wonderd what she was thinking about. We knew what was happening. We were thinking 2 different things. and sitting next to each other at the same time. This has been asurprisingly quiet week for me. Very unemotional. I feel at peace though. Thank you so much for a little insight.

Prayers always for evveryone.

[mary colleen]

Snowflake, you rock. What a wonderful post.

[sharonjo]

Snowflake,

I'm with Jen, that post was amazing! I wholeheartedly agree with everything you said, as I'm sure most here do. You certainly have a way with words and your posts always make me think and almost always make me laugh. Thank you for bringing some light into the darkness of this disease!

Bill,

I am glad that you can now see yourself surviving this disease for quite a while to come. There is a saying "If you can dream it, you can do it". That is how I feel about this disease - If I believe I can survive this disease, then that is more than half the battle! I am with Ernie, confident that you are a survivor and will be with us for many years to come.

God bless you both,

Sharon

[J.C.]

Snowflake,

I'm with you,

your post is full of

hope even if you have

to wear your big girl panties

on many occasions.

Bill,

I read your post, they are

often depressing, but slowly,

very slowly getting a wee bit

better.

For myself, I'll keep reading

the posts and try to live my

life my way, even if I'm slowly

getting in my eighties, with two

cancers still active and not treated.

''That was ment to be

funny by the way-------''

Jackie

[bware21]

Hey Guys,

For those that think this was too depressing -- I can understand how you'd see it that way. I don't see it that way at all, but then I guess we're all different and we're all in different places.

Maybe I've been a bit selfish here? Thinking about it, when I was down I caused a bit of a storm here when I saw things that were depressing to me. I didn't give a second thought to everyone else who might not be in the same place. As a consequence, some people got mighty upset. Of course, when I realized that little fact it was too late -- the damage was already done.

Now I'm feeling pretty good and same problem. People are just all over the place emotionally, and that's no surprise. Perhaps I need to think twice or thrice before I post anything else -- no good if I get out of it what I need and leave a trail of misery behind. I suspect there's no solution to this. It's the differences that make us unique.

For what it's worth, I'm having a great day.

Bill