Experiences and Revelations.

[DeanCarl]

I had a couple of things happen over the last couple of days. One was an experience I had while in line at the grocery store. The other was an epiphany concerning my attitude toward my own life. Both had to do with the fact that this disease has left me disabled.

First, the experience: I was on my scooter and waiting in line to check out at the grocery store. A man around my age, maybe a little younger, was behind me. I heard him say to his companion, "must be nice to sit down and roll around all day". I turned my scooter around, thereby giving him a good look at the oxygen tube in my nose and replied, "I'll tell you what. I'll give you this scooter right now if your willing to take the reason I'm in it along with it. I have late stage lung cancer. Chances are I will NOT live out this year. I can't breath very well and my legs hurt almost constantly. If you want to trade places with me and 'roll around all day', I'm MORE than willing to make that tade RIGHT NOW."

That pretty much ended that conversation.

The epiphany: I have been feeling "cut off" a bit from life lately. What I came to realize was that I'd fallen into a trap many men fall into, but one that more and more women get nailed by lately. The trap is titled: "I Am What I do". In other words a persons job defines, in their own mind, WHO they are. "What do you do" is the second most asked question when two people meet (just after the exchange of names). I'd thought I'd avoided that trap by choosing work based on who I was but that turns out not to be the case.

I've come to this realization at this time because I've reached a place where everything IS in place. I have my scooter so I can now go where adn when I want. My finances are in good shape and I'm set up to go on SSDI when my State Disability runs out. I have a good medical team with my hospice nurse and a doctor who's willing to go the extra mile. So what happened was that I ran into the "so NOW what?" wall!

I'm not sure quite yet where I'm going with that one. It's going to take some thought. I do know I need a reason. A reason to get up in the morning. A reason to get out the door and into the world. I'm not depressed about this at all. On the contrary, this epiphany has me excited. The knowlage of why I've been feeling "cut off" gives me the opportunity to make a real possitive change in my life. Guess it's time to get to it!

Dean

[Cookieman]

Dean,

First, I'd like to comment about your "experience". Too many people look at others in the vain of "I wish I could do that", because some one elses lot looks better that ours. As I was growing up my dad (who was a great one for having a saying about any and everything) told me to be careful about what I asked for and "I felt sorry for myself because I had no shoes until I saw a man with no feet". I think you help the two "gentlemen" by pointing out that it's not as easy as it looks, even if it's going through a "normal" daily life.

I think that a lot of people go through the "where do I go from here" stage in they're life (some early, some later). Several years ago I went through a particularly bad year. My son went to prison for the third time, my mother pasted away, my divorce got filed by my ex. (twice, I could even do that one right), my youngest daughter cut her wrists. I took a little break (checked myself into the mental ward for a week). On my return to the "real " world, I went through the "where do I go from here". I sat down with a catalogue of classes from the local community center. I look for things I had never done before, and that I thought I might enjoy. I took a basket weaving class, a dance class, and a couple of others. The only thing I stuck with was the dancinig (Becky and I like to get out a dance whenever we can). The point is, try anything once. You might be surprised what to find that you like.

Cookieman

[MO_Sugar]

Dean,

When I was at the zoo the other day I had a 20 something young man make a comment about using the scoot in the zoo. I just looked at him and shook my head. I don't think people "think" sometimes before they make a stupid comment. I know I have caught MYSELF thinking things about folks I see parking a $40,000 vehicle in a handicap space. I don't know if they have a true medical need but I still "judge" them. I am trying HARD to stop that!!

God Bless,

MO

[kimblanchard]

Dean

I enjoyed your response to the rude clod about the scooter, guess that left him speechless for a little while! As far as where are you going/ I don't know, I haven't figured that part out either. I am trying to, just for once in my life, stop and smell the roses and enjoy every second I have left on this earth as I know you are too. Where ever you are going you are sure inspiring a lot of people on the way, just think of all the new friends you have made on this message board, who would have ever thought a disease could bring you friends? You have inspired me many times through your posts.

Bess B

[kimblanchard]

Dean,

I have had critical thoughts about some of the people I’ve seen using the store provided scooters, particularly some of the fat and slovenly looking ones. Of course I know better than to assume anything about them. They are disabled, de facto, if they use this equipment. My wife had a handicapped parking plate for years because of bungled hip surgery. I never made use of this privilege unless she was in the car. Since my SCLC dx , my MD got a permanent parking permit for me. They are generous because they know with SCLC, permanent is usually not very long. I use it, despite current improvement in my lung function, because it is my one reward for this crappy condition. I’m almost hoping someone makes a snide remark to me about being healthy so that I have an excuse to vent my anger about what a raw deal LC is.

When I joined the Navy in 51, I learned that I was quite smart at passing their test to earn a higher rank and pay. Freed from our stifling education system, I began a lifelong acquisition of intellectual attainment. After college and some postgrad study I worked in applied chemical research, always learning new things, and often intellectually stimulated. I wrote papers and patents and gave presentations. Then I turned 65 and abruptly ceased to exist as a participant in any scientific endeavor. One of my frequent dreams consists of my wandering around a large corporate headquarters looking for the lab. I also dream of being back in school and worry about my grades.

It is only natural that we feel cut off. We want to be part of the organization, one of the warriors of the tribe. After nearly 60 years of being forced into group activity, I was suddenly cast out. My wife and hobby work around the house filled my time. Then my wife died. I joined the Retired adult Program at the local college and two book clubs. Then I got too sick to go to meetings. Now I have medical contacts, e-mail and a few local friends plus the LC Survivors to structure my time. I also shop when I can. a lot.

One of my best reasons to get up in the morning is the promise of a cup of de-caffeinated coffee and to make a phone call to my brother’s widow. She keeps track of me.

What’s next? Springtime gardening I hope.

Dan

[gerbil runner]

Dean - you enrich so many of our lives with your writings. Never feel you aren't "contributing" or "doing" anything with your life.

I, for one, (and I bet others including your daughter) would LOVE to see a collection of stuff you've written. Some of your posts make beautiful essays.

About the scooter thing - I've noticed the ads on TV for "The Scooter Store" feature very healthy, happy looking people. Slim, strong, rosy-cheeked. No other medical supplies in sight. Somehow I think stuff like that puts the idea in some minds that the scooter is more of a luxury item than a necessity.

[Angie Daughter of Bill]

DeanCarl

I'm sorry that you had to experience someone's snide remark about your scooter. Please try to chalk it up to someone's ignorance. Although, you handled the situation very well. Local people that have found out about my Dad have made remarks about how "good he looks for someone with lung cancer". Tell me, just HOW DOES SOMEONE WITH LUNG CANCER LOOK???? I want to shout this at people. I want to tell them that he may look good, but he is feeling rotten due to chemo, that emotionally he is a wreck, that he is scared to death, etc. I know that they are trying to make conversation, but sometimes I wish they would just keep their mouth shut!

As far as what to do now..........well, DeanCarl, if you never do anything more than exist and battle lung cancer, please know that you have done something. You have helped me more than you know. You are about my Dad's age and have a lot of things in common with him. You have helped this very scared daughter with your wisdom and intellect more times than I can count. Many times, you helped me by responding to someone else's post. So you see, Dean, you ARE doing something. You are helping many people here. Hold your head up high and be proud. If anyone asks "What do you do?", you could reply that you are in the business of helping people. (Because it's true and I, for one, thank you from the bottom of my heart!!)

[shelliemacs]

Dean

I don't know what it must have been like in that moment. I am enraged for you. I know my father has gotten some down right rude things said to him since his dx. People say to him, right to his face, you "were" a good man. I was shocked to hear some of his co workers say this to him when I took him there to visit one day. I said back to them (without my trash airforce/navy mouth) When did you loose your sight, they would say "what I am not blind" I say "Oh you must be cause he is still standing here in front of you a--Hole!

the second part, well if we were all only got "it" maybe the world would be better for everyone to wake up and make the day "THE DAY' to live.

[Debaroo]

Dean, you are a thought inspiring man, and those that you touch with your gift, if they are smart, will be forever changed. Thank you for that.

The ignorance is more than frustrating. After my dad was in the hospital to have the fluid in his lungs drained last June, a friend of mine said "wow, I guess your father really IS sick" uh, like what, did she think I made the whole thing up???? Then, one friday- two weeks after Daddys funeral, (she had attended Daddys wake on a friday night),we were at the bus stop waiting for our kids to get home. I asked her what she had planned for the weekend. She said, "We have ANOTHER wake to go to tonight...do you believe it? Every friday night we have a wake to go to." She was not shocked, just annoyed. Normally I am not one to be speechless, I am the queen of the comeback...but this was too hurtful-and I didn't want to cry...

All I know is that these exchanges only make me more aware of thinking before I speak-and that is a positive thing, so at least some good comes from the ignorance of others...I guess.

Take care, Dean, your wisdom and caring nature are invaluble to humanity!!!!!!!!!!!!! Deb

[Snowflake]

Dean,

Maybe for your "something", you could talk to Katie and Rick about having a "Dear Dean" line where you can give your good advice to board members who need either compassion or a size 9 up the ol' hind end...

Then again, you do better just scanning the board the hopping in where ever and everyone else is open to jump in, too....

I have heard that you're an artist - how are you doing in THAT venue? Is that one of your outlets?

Maybe you and Gay could set up your calendar to do the "dating" thing, like when you were first a 'thing' (got that word from my spouse!)... Roll out for a picnic, go to the ZOO, take in a coffee house in the afternoon... Get back into the "young again" swing! Theme for you? Get the gray out!

Maybe you need a mission statement...an ultimate goal...a reaffirmation of your wedding vows, maybe... Maybe you need to spend some time with those kids again, even if it's on a limited schedule. I'm sure you received more benefits down deep than anything you could fold and put in your pocket...

You are a valued member of this group of people, Dean. If you were to make THIS a priority, you should be able to realize a lot of self-satisifaction...or maybe, you SHOULD put together a book of essays/memoirs... I'd be more than happy to help if you would like...

Take care, Dean!

xxoo

Becky

[mayos]

Dean...Your words were the first ones on this board that made me sit up and take notice....'lung cancer is not the end of the world'....when I came here I thought it was. You have such a way with words and thoughts.....I'm always gravitated to your posts. Your posts make me feel good on my bad days....and 'GOOD-ER' on my good days. Please know how much you are needed and appreciated Dean.

[betplace]

I had a change of heart about my first posting, I must have been feeling very bitter. I edited it out.

Dean, I know how you feel, there are judgemental insensitive people everywhere. All you can do is give em a good comeback and then move on with your day!

Blessings

Betty

[Cindy RN]

DEAN-I understand what you mean. I have had to use the scooters at the Wal-Mart last year while I was in chemo. I looked OK, I had a wig on so nobody knew. I did feel like people were looking at me

As for not LOOKING sick. I notice a difference when I am on chemo and when I am not. I lost my hair within the first few months and wore hats usually. People gave me their seats, let me cut in line, etc. Later after my hair grew in and things sure changed. We all need to realize that people can be very ill (lc) but it doesn't show on the outside.

BETTY-Please do not take offense to the comment about weight. I too have been overweight most of my life. I was the same as you, I could cut back to nothing and still gain When I found out about the cancer, I thought---weight loss!! WELL it did not happen to me. I have decided God had me overweight so I could get thru this awful disease. Some people are insensitive but don't mean to. My dad is one of the worlds worst. He is always saying something that is rude but does not mean to be hurtful. He is a sweet man. Love yourself for who you are. A very sweet and caring lady.

Love Cindy

[betplace]

Thank You Cindy!

I usually do ignore such stuff, but I get tired of being judged by my looks and not my heart and mind! Thanks for the bright words, I deleted all that stuff, no need to air my dirty laundry I guess! Thanks again, you are a wonderful caring lady yourself.

Blessings

Betty

[Elaine]

Betty,

I did read your post and the one it referred to. I was kind of shocked when I read the post you replied too, as well. Like Connie, I think people often don't think about how what they are saying or writing can effect others, and how it can be interpertted (sp). This disease is ugly. What it does is ugly. You and we are not. I get pretty down sometimes and cry like a baby, but at least I can cry now. The first weeks, I was just numb and just full of anxiety too- a weird combo, to be sure. You are a beuatiful person, inside and out. The inequity in our society is the most heinous things about this world. I don't want to leave the glory of this world, but I won't miss social, ecomomic and political inequaility. Glad writing the post helped you feel PRO active, and I really didn't see much wrong with it. It came from the heart, the heart on one day, for a part of that day, and it is not the way you feel all of the time.

If you need a friend, I need one too, so PM me.

Elaine

[BeckyCW]

Dean,

I love the idea of you writing a book to collect some of that wisdom for others to enjoy and learn from. I bet if you just went back through some of your posts here on the board, you'd find enough themes to make at least a dozen chapters. I, for one, would buy the book in a heartbeat. And I know I'm not alone. I'd do anything to help, too. Your words are inspiring and you have so much wisdom to offer others -- whether or not they have lung cancer!

I hope you're enjoying this incredible weather we're having. This is why we live in So. Calif., right?

Hoping you and Gay have a great day tomorrow,

BeckyCW

[kimd]

Dean:

So proud of you for letting people know why you "ride around all day." I have made it a priority to teach my children not to guess why people are different, just accept them and try to understand that they have problems. You have been such an inspiration to so many with this disease and how you are dealing with it. Your reason for getting up every day is to inspire the rest of us! You are such a strong person! Take care and hugs headed your way!

[kimblanchard]

Dear Dean,

I seem to read a lot more than I post. Don't know why, but I just want you to know that I always read your posts because of how you write and what you have to say. You have great insight and really know just how to put it into words. I have learned so much from every one of your thoughts written. I have a feeling about you and it's that I believe you will be around for much longer than you think, maybe because I really want you to and maybe because you contribute so much to this website with your intellect and insight. I believe your job here is far from over.

Kim

[janet]

Dean and Dan

I love you guys, I wish I could have you both over for a barbeque...

you both make me happy

janet

[kimblanchard]

Janet,

I would love to be at that barbeque!! There's just something about Dean and Dan!!

Kim

[Elaine]

I'll supply a side dish and some meat for the grill. I, too love to read Dan AND Dean. Love to see both sides. Just think of the after dinner conversations!!

haven't seen Dan on lately. Hope you are doing well.

Elaine