Midnight Ramblings

I doubt I'll be short. You all know I'm long winded, so read at your own risk. It's just stuff anyway.

First, as most of you know I'm a nurse. At least until last August I was a renal nurse. I had lost my mom to lung cancer 2 years before and she hardly had anything -- geesh. I knew that if someone came back with a nodule in their lung they were dead. This is a nursing professional now, family lung cancer next to nothing still lasted 2 years post-diagnosis, I swear Dad came 3 times before she finally went with him and she was only 72. She could have done more (looking back) to live, but she was done.

I had to get that out. Because I came here, 4-months post-diagnosis.

I found out right away -- I WAS WRONG.

And I found out real fast that lung cancer was not an immediate (meaning to me, not necessarily within a year or two) death sentence. I found survivors. I found people dying, some after a long time, only some with "worse" cancer than either I or my mom had (and I had already lived with a lot "worse" than she had!)

Not only was the world going on, but this little corner was full of hope and God and information and complete with the bickering commonly found on any long-term (I said it AGAIN! LONG-TERM!) discussion board.

People ask me why I'm so positive, and I have to honestly say -- this is it. I've been putting one foot in front of the other for at least 5-6 years, we all have our stories and mine doesn't end with mom dying and no sooner does life settle down then I get lung cancer -- oh no! It goes on. It's been going on for at least 52 years, and it won't stop.

We often ask -- why me? Or -- why my family? I hear it, I see it, and we can't help but ask it. So yes, I asked it, but I asked it with the intention of getting some answers.

One of my answers is my son had just turned 17, was bipolar, and had pretty much stopped taking his meds. Boy did he grow up fast.

One of my answers is in spite of my mid-stream middle-aged energy I had to stop work within a couple months and darn-it if every time I think things are fine and I should go back to work something else happens. So I had to stop thinking, obviously :)

I thought maybe I'm supposed to finally work on that book that has been floating around in my head since my mid-twenties. I came up with new angles on it, but not any words. I've come a lot further with a new book idea -- hmmmm and I've written an article, even got published as a 'guest writer' lol -- I still need a copy of that one. And I dug out my most recent 'writer's digest' though I haven't looked at it yet. It's only 2008.

My cousin was just diagnosed, just like me, only I didn't find out til after the WBR, it's been 2 months and I'm kinda PO'd about that one so I'll leave it alone. I thought for minute maybe there was some reason there. And maybe there was. Is. We'll see. She's in hospice. I consider her another 'less than' but what do I know? Not a lot. I have found out a lot, I was wrong.

And that's about it. Except that wrong thing. I was an intelligent adult. Hecht, I was a NURSE for Pete's sake AND my mother died from lung cancer. (And my father wanting her company on the other side, go figure -- whatever reason.)

I STILL thought lung cancer was for smokers and I STILL thought a lung tumor meant cancer meant dying not too long from now. So why do we get so angry when the average Jane or Joe says something STUPID when we tell them we have lung cancer? Do we honestly expect them to know something we didn't know a few days ago? Do we honestly think they don't care? We know they don't call or come by much ... (but is it ours to wonder why? Hmmmmm I don't have an answer for that one, but remember, they are us they really are. They do that during divorce and ... and ... fair-weather people are very common, they don't know what to Do so they do NOTHING.)

And our doctors!!!!! I can hardly count the number of times my cousin asked me about PROGNOSIS. What else was she going to ask? 2 months post diagnosis with hospice already involved and she wants to know about prognosis. So I told her. WE DON'T TALK ABOUT PROGNOSIS. You don't know. Your doctor doesn't know. Along the line, you figure out, you and God together figure out if you're done yet then you put on the gloves and start fighting. Every few months or years or so you sit down and ask the question again, hopefully you don't give it too much energy. You give the chemo a chance to work. You give the radiation a chance to work. You give YOURSELF a chance to get moving again. I was standing in front of her a year post-diagnosis with what obviously started as a 'worse-than' case and I drove myself and I stood with energy telling her I just had a brain mets removed and a week ago I started chemo for adrenal mets and I have every intention of being here a year or so from now. She asked me -- did the doctor change my prognosis? And she caught herself she remembered what I said when she last asked me about prognosis. So she was encouraged. I guess I'll talk to her soon.

The bottom line was, she asked about prognosis. She insisted on prognosis. This is what doctors hear ALL THE TIME. Every day, every day they work, somebody asks. Do they have to be so negative? No. Do they have to say you might live when it turns out it's worse than that? No. Do they even know? NO. Do they know they don't know? Probably. And yes, many do try to say so but what we hear is the answer and what we do is complain. They'll put it one way to one patient and they'll complain. They'll put it another way to another patient and they'll complain. They can't win and it gets old and they forget what they learned in bedside school -- they don't know. Some patients want them to be God. Some want to talk to them but don't know what to ask. Some want to be taken care of. Some have to be an integral part of the team. Most don't have the energy but we do it anyway. I don't know. Give your doctor a break. If he or she still won't talk to you move on.

Why does that bother me so much? You guys are probably the reason I'm still keepin' on keepin' on. There are extremes in any profession but by and large our doctors are on our side and want us to live. They tell us what we ask, based on what they see, but most of them know we are not statistics. Way too many don't get that across to us. Some bother to take the time and explain it to us. We like them. Some don't realize it's so important. My own doctor has been too much "you aren't coming out of this alive", but at the same time he told me from the get-go that MY ATTITUDE had everything to do with my survival. Most doctors forget that part.

So I'll climb down off my podium and I'll thank each and every one of you again for helping me be here. There is no doubt, you are part of the reason that keeps me going. I'm not trying to get on anybody's case, I hope you know that, my opinion of doctors are influenced in part by being a nurse, in part by being human, in part by being the pushy patient. And some are darn lousy. And nobody knows how to act when someone they know is diagnosed. It's never the same because we're all different.

Thank you for that, too.

Laurie

By Chi-Dreamer
Posted July 3, 2009 at 9:58 am
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WoW Laurie, you must be out of breath after all that, LOL. I hope you got some sleep last night. Yes this community is the backbone to the majority on here and we all appreciate finding each other. I understand some of your frustration and pain but know that your attitude and feedback has also been an aid to others here.
Maybe you should start that book it would be a good one I'm sure.
Have a Happy & Safe 4th of July

Linda

By Arasmik
Posted July 3, 2009 at 12:02 pm
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Laurie,
I love the way you vent....I think most of us wish we had a way to put into words our fears, frustrations, and hopes. You said it all and I feel better having read it.
thank you,
Kim

By Barb723
Posted July 3, 2009 at 12:35 pm
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What would you say about this doctor who's patient was very positive, a fighter, young and in good health. One day when this patient was done with her 7 week chemo and was going to her doctor for results from her ct scan. The doctor says to her that the chemo didn't work. There was some shrinkage of the tumors but not enough. The patients takes a big gulp and says ok what now, more chemo, different chemo etc.... He says I am so sorry, do you want to know about the statistics. WHAT!! What are you talking about? Well, I am so sorry. The patient and family ask sorry about what? Well maybe you shouldn't know or do you want to know...Oh I am so sorry. At this point, she and the family are so confused on what he is talking about. Then the doctor blurts out you have about 5 year to live. Your body will get used to the chemo and it will stop working.Then says, oh yeah, I am so sorry should I leave the room to let you cry. In the meantime he sends in a nurse to comfort the patient. As the patient was crying, the nurse reassured her that there was lots of chemo's out there that could kill her tumors. She said don't give up hope. The patient said to her that the doctor just did. She was shocked!
That patient was me. My doctor gave up on me and killed my hope, my positive thinking and my fight. I was diagnosed with stage lllb non small lung cancer with 2 lymph nodes that had tumors. I guess I found a doctor who is playing God, believes in the statistics and tells you things that you didn't ask for in the first place.
Since then I switch doctors. My new doctor believes that I can fight this and told me that he was not God to tell me how long I had. He gave me back my hope, my fight and positive thinking that I can and will fight this beast!
Just thought that I share with you my doctor experience. And I thank god everyday that I found this site that has people like you that gives so much hope. : )
Have a great 4th of July.
God Bless,
Barb

By mitziger
Posted July 3, 2009 at 4:12 pm
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My surgeon came in with his team, told me the kind of cancer I had said we cannot stage it but some people do very well and live for a long time and some don't do so good. I chose to be one of those who lives for a long time and that is my attitude, I started out with and swore that it was not cancer at all. My attitude gets an adjustment once in a while but I seem to snap out of it and get back on the upbeat track. Have a good 4th of july all and good health. mitzi

By Granny888
Posted July 3, 2009 at 5:53 pm
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I'm sorry Barb, sounds like you got one of the lousy ones, or one who has had a lot of lousy experience to draw on. We know about stats. We are tomorrow's stats not yesterdays'.

By staceym
Posted July 5, 2009 at 12:02 am
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I agree - I call this site "my therapy." I wish my husband (the patient) would join but he is not interested at this point. I think we all can relate to each other and share similar experiences.

By ksep
Posted July 6, 2009 at 11:13 pm
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Hi,
I'm glad to have read your post Laurie. I have so many mixed feelings about the Doctors. We have only dealt with one and he is supposed to be one of the best surgeons in the country. But I really have to wonder if things change what he would be like. You can hardly talk to him at all. My husband (I think) just believes it was taken out, period. Oh, I'm sure it lurks probably more than I know in his mind about what could happen. I too wish he could utilize this to speak to others but he can't really type or use the computer. Plus he just doesn't want to hear anything. I tell him positive things that I read, maybe that is for the best. He has said before that he would not go through anything like that again (the surgery) and would just let it take it's course. I can't imagine feeling that way. I know the surgery was very difficult but I feel I would fight with everything I had. I don't know. Is that because I'm not the patient?? Therefore that's why I dread the check ups so much. I felt I knew from early on in our relationship that "something" would happen. Not being negative but him being a heavy smoker and already diagnosed with the beginnings of emphysema I guess I thought that might happen first. That and pulmonary fibrosis.....the cancer thing didn't really enter my mind even though cancer is very prevalent in his family. But......I will be here with the boxing gloves on if the time comes. Yes, I have had friends turn away but you know what the positive is? We have become so very much closer and our marriage is so much stronger day by day. He knows now that I am here by his side no matter what. I think he had his doubts at first (not sure why) that I wouldn't want to deal with it and he would be a burden but he now knows otherwise. Hey, thanks for letting me be part of the "midnight rambling". That's what this is about....I'm grateful to have all of you and the added prayers help us all. Kathy

By ksep
Posted July 6, 2009 at 11:21 pm
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Oh, P.S. Phil always asks the doctor "how long do people like me usually live with this?" I have tried explaining that they CAN'T say and he doesn't understand that, wants a clear cut answer.....of course the great doctor doesn't even answer him....I just wish I could get the FIGHTING thing ingrained in him but guess as long as everything is going ok it's pointless right now.....I don't know......thanks, Kathy

By simplyklb
Posted July 7, 2009 at 3:36 am
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Hi Laurie,
My mom does not want to know her prognosis and I don't blame her. Her attitude is to fight this!! I know she is scared because her cancer is growing again. I am scared, I have already seen my dad die form this disease. I really don't want to see my mom die from it too. I know people who have had both parents die from lung cancer. Like my best friend says, I am going to continue to hope until there is no more hope.

I am familiar with renal disease... My oldest brother has renal disease from an unknown cause. He got a kidney from our middle brother last Sept. Both brothers are doing well! (Yes about five weeks before our dad passed away, the kidney transplant took place.)

Kristi

By Barbell
Posted July 7, 2009 at 10:46 pm
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Granny888, I enjoyed reading your post. Your ability to be tough and fight come through loud and clear and reiterate what we all know: You have to keep on keeping on and never give up. God bless you and I wish you much success as you continue to defeat the monster. Love, Judy

By Chauncey53
Posted July 9, 2009 at 1:19 am
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Dear Laurie - love your ramblings, midnite or otherwise.
In my 'previous life' I had budgets and deadlines and needed answers, time schedules etc etc... I had control... It seemed so very important to me at the time.
Family and friends don't know what to say and I find myself trying to fill in the awkward times.
I feel a change in the empathy level when I say LUNG cancer - maybe its my own feeling of failure at being here.
I don't need my Onc to give me statistics - I can find them on my own and to his credit he has never talked in those terms.
Now I'm learning the ebbs and tides of an Alimta schedule and taking advantage of all the good days.
My son is getting married 8/22 and I'll be an official grandma by Thanksgiving!! Full speed ahead and damn the torpedoes...
I welcome being on this new journey with you.
Debbie

Welcome to Inspire!

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