Tick tock...

Okay... I have not posted in a few days, maybe a week... not sure, I'm writting this just really to get it out of my system...

I have a super support system, and a postive outlook on things, but what I feel like I'm lacking is a place to share some fears, fears that I think are normal, and for the most part very silly... but it seems everytime I say them outloud Im told " oh don't be silly" or " don't say that things are going to be fine" " don't talk like that" I know that I am going to make it through all of this and live many many years to come, it's just the waiting and waiting that has given me way too much time to think! haha That seems to never be a good thing...

My biggest fear is that my two families will be coming together for the first time... ever! By that I mean that my parents will be making their first trip to visit me, and Jacob and his family will be at the hospital with me. Now don't get me wrong, I know just how lucky a person I am to have the family that I have, both mine, and Jacob's, but Jacob has never even met my parents and Im not really going to be able to be the go between (as I will be sleeping on the OR table! haha) so Im just stressed about what they will do, and that they get a long etc. etc... just the normal things when your partner meets your parents for the first time...

Then I move on to my fear of the surgery itself... Here is the one thing that there is not enough of on the internet... sites that let you know what's going to happen, by actual people!!!! Moffitt gave me a really great book about what to expect and went through just about everything... but I think it's better to hear it from other people... people like me!

I have had knee surgeries in the past, but that was years ago, and outpatient, Im very scared about the epidural (im the worlds biggest baby!) and the catheter, that's the big one for me, I have all of these crazy dreams about that one! haha

I know deep down that Im going to be fine, and Im a big boy I can handle lots of things, and I know that there are a lot of people that would love nothing more than to be able to sit here and worry about surgery, I know that Im a very lucky person, and Im more thankful than Ill ever be able to express that I have been given this chance to worry, and still go on and enjoy each day with little discomfort... but Im just human, and I think, and imagine, and worry...

Gosh, that feels better already just getting it out there to the world, that yes I know I'm going to be fine, but it's still okay for me to worry and have some fears, even if they are proably just silly!

By sharpie
Posted September 18, 2009 at 9:45 pm
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Dear Orlando77guy,

I want to HIGHLY recommend a book and CD called "Prepare for Surgery: Heal Faster" by Peggy Huddleston of Harvard www.healfaster.com

The book REALLY helped me be an informed, proactive patient. It has ideas and suggestions about getting ready to have and going through and healing from surgery that I NEVER would have thought of.

I still listen to the CD 5 months after my own lc lobectomy surgery. The CD doesn't even mention the word surgery but is a great help to bring peace, tranquility and comfort before, during and after the surgery. I have given this book/CD combination to at least 10 people, including my own surgeon as a Thank You gift for being such a great doctor. The CD is a great help to anyone having chemo or radiation also.

I've enjoyed hearing from you on this site and I wish you only the very best outcome -- when is your surgery???

Hang in there and vent here anytime. People are "Inspired" by many things. Sometimes it's just the humanity of another person's posting what many of us are dealing with every second of every day.

RE: Your parents and family all coming together......well, I suggest, if need be, that you remind them that this time is about YOU, not THEM. You need THEIR support, encouragement (from the French word "heart", and yes, cooperation right now.

It's so interesting to me how we are tested in times of adversity like a lc dx.

Best,
Rose (Sharpie)

By tiffmomiff
Posted September 18, 2009 at 9:46 pm
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all of these people will do just fine together, do you know why? because, in this case you are the tie that binds. they are all there for you. everything happens for a reason. through this your parents will probably be able to tell the depth of love that jacob has for you as well as jacobs parents seeing the same thing. instead of superficial conversation between people that do not know each other, they will have to cut to the chase and rally together for you. this has potential for a wonderful future bond of both families. as for you and your epidural, shall i send you my birth video? jk, if i did you would hear me screaming (like blair witch project screaming) to please get my epidural. it so wonderful. it does pinch, but literally only for about five seconds. after that, smooth sailing. you will probably get the catheter after the epidural, so you will care less, in fact you will have to keep checking to make sure that any lower extremities even exist (bc of the epidural doing its job). keep venting, its healthy.... ; )

By antonella
Posted September 18, 2009 at 9:49 pm
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Hey Orlando, you're sooo cute. I'm a IIIA NSC LC surviror. (Operation Vat procedure, Aptil 14, 2008). You will survive as well but I understand the fear. The operation will go fine you'll have tubes coming out to drain the fluids from your lung. That was strange, but not painful just unconfortable. They will give you great drugs to get through, absolutely no pain. Think of it as a begining of your new life. This will bring the two families together, they will be talking about you, you're the common denominator, they will have lot's to talk about and do.
The fear is real, no doubt about it but it's the begining of healing both physically (getting rid of the cancer) and spiritually, take the time to enjoy the attention and the love coming your way.
I'll be thinking of you.
hugs Antonella

By Farmerswife
Posted September 18, 2009 at 9:51 pm
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Surgery is an unpleasant experience as are the days of healing. I don't blame you for being a baby. Your families colliding would make a good movie, don't ya think? Hopefully everybody's gracious, but if someone isn't ask for more pain meds and ignore them.

Whine all you want here. You won't wear us down!

Take care, Susan

By orlando77guy
Posted September 18, 2009 at 10:16 pm
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Biggest Smile in months on my face right now!!!! Thank you all so much!!!!!!

My mom gave me that whole birth thing! haha One of my employees also works in Labor and Delivery and she has been great about telling me what to expect...

I agree it would be a really good movie... we'll just have to see if Oprah or Ellen responds first! haha

Again you all are the best! Have a wonderful weekend, and Happy New Year to anyone celebrating tommrow!
Christopher

off to look over that website now!

By brooklyn1
Posted September 18, 2009 at 10:28 pm
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Hey, Orlando,
I loved reading your post, and also the replies. Of course you are afraid of this surgery - you are perfectly normal to be, and this is a safe place to let down the brave facade and face those fears and vent. Sometimes it is so exhausting making every one else at ease with your illness, while keeping all your own feelings carefully tucked away. It helps to write things out, and just purge the little demons that keep spinning in your head.

This is your surgery, and right now all your energies should be focused on you. You don't have to worry about Jacob's and your family not getting along. I used to supervise the surgical waiting room at a medical center here, and the families waiting for news of their loved one have only one thing on their mind: that will be you, and your complete recovery. You will have lots of high tech equipment running in and out of you, as well as many dedicated and highly trained people to treat and monitor you. It's not quite a spa, but you will definitely get lots of attention!

And lots of people here praying for you, because you are a pretty amazing guy, and though you have been through so much, you have a sense of whimsy and optimism, and honesty that is deeply touching. And contagious - I am picturing you smiling, living life healthy, and happy - ever after! Whenever you start freaking out, come on back and we'll do this again.
All the best to you and Jacob, Peggy

By HollyJo
Posted September 19, 2009 at 2:06 am
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Christopher,
One thing I learned last year when I had to have a very scary surgery, was that almost ALL of us are Scared and Afraid!
And not just of the Procedure, but being sedated! I am the biggest Baby if you try and sedate me! I actually fought them physically last month! lol
My surgeon came over to me in the OR and gave me "the look" as I had ahold of his nurses hand..
I let go, seems like I woke up 5 min later...
Dont ever feel silly for being nervous or afraid, because the fact is, most of us are.
I just know you will be fine! I look forward to all your post letting us know the details.
As far as Jacob and your family, this is probably a great "ice breaker"....
I think they will all share something in common, there love for you! That will give them a possitive focal point, if they have any pre-concieved negative ones, I think they will all be put to rest through your strength and their love for you.
I wish you all the best and cant wait to here from you..
Hugs Holly
Ps. I love the Title of your post! I can just hear the rest of it! One of my fav sayings when I am waiting on someone!

By orlando77guy
Posted September 19, 2009 at 11:57 am
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Thanks again...

Robinwd,

I am having a Lower Left Lobectomy on 10/1/09... My Thoracic Surgeon ONC thinks it's a Carcinoid Tumor, but will not know 100% until it comes out...

New question on this... Twice now I have had blinding pain right under my left shoulder, it just comes on for no reason and goes away as soon as it came on... No breathing trouble related to it and no other symptoms... Is it my crazy brain playing tricks? or has anyone else had this before surgery or other treatment? The tumor sits right there on the very bottom and back of my lower left lobe... It's the weekend and a Holiday for my Dr so Im not sure it's worthy of a phone call...

Okay off to work now... My last closing weekend for a bit!

By robinwd
Posted September 19, 2009 at 12:19 pm
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Might be that the tumor causes the lung to press on a nerve when you move a certain way.
Wishing you the best, OrlandoGuy! Don't sweat the small stuff (catheter and epidural!).

By Marylou1
Posted September 19, 2009 at 1:34 pm
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Hey Orlando:

I too was a bit afraid of that epidural, but please don't be. They always give you something before you are wisked off to the operating room. You will be so loopy that you will probably have a vague memory of feeling a tiny pin prick. However, when they are explaining this procedure to you, they make such a big about it.

The catheter is inserted after you are asleep anyway, so you won't know anything about it.

As far as family goes, you have my prayers on that. You will be asleep and will not be in control of the situation. They love you and should behave like adults especially under the circumstances.

Whine away, we all do.
Love to all,
Marylou

By Kammy7
Posted September 19, 2009 at 1:57 pm
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Hi Orlando guy, Waiting for surgery is the hardest part. You will be so relieved when its over. Before the epidural and cat they will drug you up so you wont be anxious or afraid. You are in the best hospitol with a great surgeon. I have no doubt you will be surrounded by love and come thru this with flying colors. After surgery they will give you a small pump that you can press and pain med will be delivered into your bloodstream. Hate to say it but its Awesome LOL. Hugs.....Kim

By peyz33
Posted September 19, 2009 at 2:37 pm
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No fear is silly - it's very real - and for those of us who have to live with it daily it's a HUGE burden. No - onw thing at a time - the family thing - well- they are all adults and they will figure it out - the important thing is that you are not in the middle - whatever "issues" any of them have they will figure out on their own. The SURGERY - I had VATS - right lung completely removed - it was a piece of cake - really - and if you think you are the world's biggest chicken - just ask anyone who knows me - I am the next one behind you . The chemo was worse for me than the surgery - you will get thru the surgery just fine - and I won't tell you that overall you will be fine - but it you are a candidate for surgery then your chances of beating this monster down are pretty good - my advise - just keep moving forward!!!! Good luck - let us know how you are when you get home - or have your partner post for you.
karen

By jstuc
Posted September 19, 2009 at 5:21 pm
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hey orlando guy, how i get through most of this stuff is i just dont think about it. i was fortunate in that when i found out i had cancer, surgery was done 3 days later and i had no time to think about it. everything for me has been bam, bam, bam. as far as the catheter, i asked the nurse in icu why i havent peed three days after surgery and she told m to lift my sheet and when i looked down we both started to laugh. i didnt even know i had one. my doctors and nurses all now know that i am pretty much on only need to know so much basis and so far its working for me. good luck, it reaaly isnt all that bad.

Joe

By Chi-Dreamer
Posted September 19, 2009 at 6:53 pm
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Hi Chris,
Hey I was so worried about the epidural that when they went to insert it in my back (with Novocaine) I passed out, didn't feel a thing. After surgery I was doing great that epidueral was awesome. The drain tube was annoying but not painful.

The hardest thing I found was to make yourself cough. They gave me a lung pillow to hold and cough. I won't lie it hurts but you must force yourself to do it and the breathing exercises to avoid fluid building in the lungs.

Your families and loved ones will be fine cause they will all be focused on you. Make sure someone updates us after surgery.

Prayers and hugs sending your way,

Linda

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