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Sundance Says HOWDY from TX

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

HOWDY! I'm new to the site and just joined on the 9th of June. Several of you have welcomed me in, but just wanted to take the opportunity to introduce myself. This is a great site, and the Semi-Colon group seems to be really happenin' people. I'm touched by your stories and amazed at your courage and determination to beat this Thing. I'm not sure how I even found the site, which is odd, because I am ususlly meticulous to detail. But, somehow there it was and when I clicked in and read some of the posts, I just knew that I had to join and try and contribute.

I just hit my 5-year mark battling my Cancer and unfortunately the majority of that time, I have spent alone with my thoughts, my dreams, my hopes, my fears, my heart and my fortitude. It has been a lonely road at times during that stretch. My friends and co-workers just do not have the depth and understanding to be able to talk about this in a way that you need sometimes. My family wishes the best, but is in the same boat. My wife understands all too well, but she has been on the night shift these past 5 years and so the nights are mine alone and I've been able to mostly get through it on my own. I never knew about a site like this before or I might have turned to it sooner. I've never been one to burden people with my problems, but having a forum like this where we're all in it together, has been an unexpected blessing for me. I'm so glad that I have someone to turn to that I can help share my experiences and treatments with to help or sooth a fear that someone else has going on.

I recently switched doctors, as my original oncologist the past 5 years, just was not giving me the direction and a good game plan anymore and I began to have doubts about what was right and what was not. The cancer center has begun to dry up: parking lots are empty, blood labs are empty, Infusion is mostly empty, and the doctor's offices are practically empty. A year ago when I was in chemo, it was standing room only wherever you had to go. Once they began demanding the Co-pays up front, I told them to update their resumes because they were going to be out of business in 6 months....looks like I was right and something is going on there, so I'm making the jump at the right time it appears.

We're currently waiting on the new oncologist to review 5 years of data for my case, and to come back with some data and information that hopefully is more than just speculation. And hopefully, there is a good game plan that we can start to believe in once again. This is a teaching hospital, UT Southwester Medical Center, where groups of oncologists from radiation, surgerey, general, and others meet in a round table discussion and go over the cases, to gather different opinions and points of views. So, it certainly sounds promising. We're just hanging in there and waiting to see what they come up with when they call us.

I've got 2 spots on the pleura of my lung and a big nodule poking out of my ribs right now that are of great concern, so we're at a critical juncture. I started with colorectal cancer, metastasized to the liver, and now spots on the pleura...so we'll see.

I updated my Profile page this weekend. Also, added material to my Expressions page, with pictures of Sundance. and a couple of stories that I wrote a couple of years ago, when all of this first started. PERSONAL REFLECTIONS is a look back one year later at what my thoughts, feelings and emotions were from going through the first big surgery, the bowel resection. THE PROMISE is the 2nd half of that story, that shows what I did with my 2nd Chance at Life and what I did not allow Cancer to do to me. Many people have read these and I've received nice feedback on them, so I wanted to post them and share them with the group. Hopefully, you will enjoy them. I started the blog post as well from here going forward. So, if you are interested, there is alot of information in all of those pages.

So far, I have been trying to help others on the board with my experiences, treatments and results. But who knows, maybe I'll be asking for your help with my latest development. Or maybe I'll need some support. It's nice to know that you are all there now and it has certainly helped me to be able to try and help each of you.

Sundance was our beautiful golden retriever. He was a great comfort during my Cancer and so in his memory, I have taken his name to honor his help and dedication to us and now I use that to now help anybody that needs help, with the same loving spirit that he used to help us with. And so, the legacy of Sundance lives on in Cyberspace and on the board.

Warmest wishes from the Heart of Texas and I look forward to talking with everybody as the time goes on. Hopefully, we'll find out something soon and I can post that.

-Craig

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I know I've welcomed you before, but want to do it again, you beena pleasure on this site, as everyone is. I am going to start reading your stories, and seeing your pics here in a minute, I had a busy day today, spent all day at the hospital (My oldest daughter broke her foot!) took 6 hours to finally be seen and get her all done! it was packed in the ER room, but I'm home now to relax.

I look forward to seeing how you do with this new doctor, it's a shame those cancer centers want co-pays upfront, are they very high??? I know I just pay a $20 copay when I see my doctor once a month, but don't have to pay anything when I go for my treatments twice a month, or scans.

We're also here to support you, I know what it's like being up all night with the thoughts, and just being alone, I have my kids here, but I always have a brave face on for them, I'm so glad you found us, and can add some great advice and support, to those who are in despair and need information, you been through ALOT and great to know we can go to you for advice as well.

I enjoy reading what you post, so you're not alone anymore, keep posting away, I think you seem like a wonderful, good-hearted guy, and so good to have you here at this forum :)

Hugssss!
~Donna

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Thanks you so much, Donna!
When I say Co-pays, I mean 25% of a scan, treatment, or surgical procedure. For example, I just had my PET scan done a couple of weeks ago, and my portion of that co-pay was close to $700 dollard co-pay out of my pocket. Had to set it up over 5 months to pay in equal installments. CT scans run about $225. I'm not back in treatment yet, but that would have been not doable. Looks like my cancer center is fading in the rear view mirror now....I'll see what this new place can do for us. I'm on PPO insurance through my work. I'll let you go, thanks for being the first post on my new entry, you are so thoughtful.

All the best
Craig

daydreamer110761's picture
daydreamer110761
Posts: 497
Joined: Dec 2008

if I said hi yet - but hi - and welcome to the site. Its got to really suck to keep that all in your head. I know that I tried for the first 2 months, and talked to my family and friends, but no one knows what you are experiencing except for people going through the same thing, so I can't imagine years of it. glad that you found the site, sorry you have to be here - but nice to meet you - I am sherrie, stage 3 something or other. I prefer not to know the details (or at least I don't remember half of what they said) I'm glad to have Nick who listens to what the doc says. Just got done with chemo in May...now, the waiting...

dorookie
Posts: 1736
Joined: Jul 2007

Did you happen to mention you were a cancer patient? Everytime I have had to go once theyknow that they rush you right in. I am sure they would have done the same even if it were your daughter. They dont want cancer patients sitting around in a waiting room, they would have at least put you two in a seperate room, the wait might have been the same but then you wouldnt have been exposed to all the sick people there. Try it next time... How is your daughter?

Beth

Annabelle41415's picture
Annabelle41415
Posts: 6554
Joined: Feb 2009

Welcome to the group Craig. Nice introduction and I'm glad you found this board. You will never be lonely here and you will always have someone most times of the day if you are looking for some answers.

Yes family and friends are wonderful support structures, but most of the time they have no clue what you are going through, let alone your fears and concerns. Even in my own family I see them going on their daily lives, which they should, because I am a fighter and I am going to win.

Lovely story about your dog. I'm glad you had that closeness with your pet during a difficult time in your life.

Please share all your thoughts, concerns and jubilations as we, as a group, are now a part of your family as well.

I'll be checking out your pages. By the way, what is you avatar of?

Kim

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

There would be absolutely no way I would be to afford those copays as well, even over 5 months, I have so many bills piling up now, it's hard for us to keep up on everything now. I hope you do find another cancer center to go too, I drive 2 hours back and forth to the one I go to now, since they are on the top 20 best cancer hospitals list, and also there is now way I will go to these lil rural area hospitals, their reputations here aren't very good anyway.

I was wondering that myself, what Kim said, is that a drawing of you in your avatar?

Hugsss!
~Donna

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hey, Donna and Kim

It is actually a real picture of me in my "recording studio" - OK, my office. There was a software program that converted this real picuture into sort of a drawing and the detail was pretty neat. It's the closest thing I have to a picture except for my baby pic that I posted. In Expressions, I have a write up for it - click on the picture and it will expand and you can see me better, yikes.

Originally meant to be the front cover of my DVD, but ended up being the inside cover picture instead. I print that pic out and send it to my friends and people I know for grins and giggles. I'm just playing "country star" as I sign them and personalize them with a message. I'll send you one if you ever want a copy. Just PM me an address and I'll get it done.

And yeah the cost of "living" is killing me with all of the bills I got too. You'd think we would get a break or something.....

Annabelle41415's picture
Annabelle41415
Posts: 6554
Joined: Feb 2009

I just replied to your story and said I answered my own question. Neat idea about the software program.

As far as office visits go, I pay $50 copay every visit and $20 for every radiation or chemo treatment, plus labs, etc. Because my husband worked for GM our insurance rates across the board are going up.

Sounds like you have a lot of out of pocket expenses. You are lucky that they allowed you to pay over several months.

Kim

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Hey, Craig.

I enjoyed reading your introduction, and I feel like it's going to be so nice getting to know you.

Sounds like you're making the right move in switching to a new oncologist! I hope you like the new one and get some helpful new information. Be sure and let us know what treatments you'll have coming up.

I look forward to hearing more from you.

*hugs*
Gail

luv3jay's picture
luv3jay
Posts: 534
Joined: May 2009

I agree with everyone else! It was nice getting to know a little about you. I'm pretty new here also, but since I've joined, I've been on the site almost daily. I so enjoy reading updates on everyone, even when I don't respond (which is most of the time). I laugh, I cry and sympathize with everyone and I'm so glad to have found this outlet. It's true that outsiders just don't understand or even have the time and/or patience for "us". Many people don't realize that this disease is all consuming in your life and they think it should be easy for us to just "get over it". But here is different, people really truly understand your fight and your struggle and can really genuinely be happy for the sometimes smallest triumphs. I will keep you in my prayers and hopefully your new Center will have some great success with your case!

Sheri

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Thank you, Sheri, and everyone else who responded to my post. I appreciate your support and it's so nice to get a reply back from people who genuinely seem to care. That just makes my day! Along with this board, I've been able to post over to the Liver board and actually was able to shed some light on CyberKnife for someone on the Brain board. A sweet lady responded back with such lovely comments. It is being able to provide something to someone that makes it all worthwhile for me.

Thank you from the bottom of my heart to everyone!!!

Sincerely - Craig

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Craig,

I'm a little late in welcoming you to the board, but I still wanted to officially do so after reading this post and all the replies. I must have missed this thread when you originally posted it. I have enjoyed reading your input on other posts!
It's a good thing you made the change to the new cancer center. You may have read that I just did the same thing & I think it will be a very good thing.
I am starting to worry about my own insurance situation down the road, but I've got to stop my mind from allowing myself to go there yet- it's still over a year away that any changes will occur. I've not ever had to fork out the 25% you're talking about with your PPO. A lot of people complain about HMO's- there's been challenges- but they've covered everything. Maybe changes for the positive will be made with health insurance and medical bills in the next couple of years (I have my doubts, but we'll see...)
Anyhow, welcome again to the board!

Lisa

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Thank you, Lisa. I appreciate your response and nice comments. We're both going in a new direction and I hope it will be the best choice for the both of us. Glad you have enjoyed my posts, I'm just out there being me. So many of us suffering out there and it just breaks my heart. I'm worried about my situation, but I turn that into a positive and have gotten out there and tried to help if I could, I seem to begin writing when I feel the Cancer closing in.

You made my day, bless you! I'm following you too, thank you so much for writing to me.

-Craig

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