Hi All:
I AM the caregiver. First post here. . .suggested by OCF survivor contact.

[b]49 YEAR OLD BOYFRIEND

HI Rebecca,

He needs an evaluation and treatment now. I'm not from Texas but you need to call you local governemtn agencies to request assistance. Hopefully, others on the board cdan help. But he needs help now. if it were me, i would take hime to Houston and look for answers, but maybe others have better ideas.

Steve

Best advice!!

Bring him here to Houston as soon as possible. If the tumor is growing that rapidly then the longer you wait the harder it will be to treat.

Do you know anyone in Houston? If you need help there are lots of groups here in the Houston Area that can and will help.

An organization here in Houston called CanCare can help with information. They are on the web at cancare.org. They know a lot about how to help.

If worse comes to worse, to get him into a place where he can be easily transfered and treated you can bring him to Ben Taub hospital in Houston. They are required by law to evaluate and treat because they serve people who are without insurance.

While he is there then you can walk just down the street and talk to the folks at MD. I know they have programs for no insurance.

Also call the Insurance Commission in Austin. They have pool insurance. It is not cheap but it is certainly cheaper than the treatments will be.

If you need more help, email me and I will do my best.

Hopefully this will at least get you started.

Good Luck!

Cindy

Rebecca,
Cindy is correct about Ben Taub and maybe MDACC. I also believe that Memorial Hermann in Houston has no legal right to turn anyone away for having no insurance and they now tout themselves for cancer treatment. Since Ellis County is so much closer to Dallas, I would also try and find out what is available in Dallas. They must have a good cancer hospital in that big metroplex.

Best of luck,
Danny G.

Thank you for the fast and useful replies Texans.....

Thank you for all the great advice. I'll start working on this today.

Again, thanks for the great advice. Realized I have more to say though. Am getting similar responses from everyone (i.e. 'Go now. Don't wait. Do whatever you have to do.'). To date, he's been 'playing by the rules', trying not to tic of anyone in the system. All along I've thought there was no time to worry about that but he's an extrememly headstrong man & and has always tended to become 'aggitated' when I suggest something that doesn't fit in with his game plan. . . .and when he gets 'aggitated', lets just say rational communication fails. I've also been concerned about scaring him (the concern he most vocalized is that he may loose some ability to speak), but you all have confirmed I need start playing hardball. I'm going to speak to his mother first but think she'll agree I need to print off these e'mails (to back me up) and give them to him to read tonight. Opinions? Suggestions?
Thanks for all your help.
Rebecca
P.S. For days I've been trying (unsuccessfully)to get him to take advantage of this wonderful forum and contact one of you surviors personally. He keeps saying he will but, doesn't. I know most any of you could provide him a personal wake-up call like none I can. Suggestions?

Rebecca, is he hiding his head in the sand about the seriousness of this? [In denial maybe?] You might tell him that one result of his delaying to take action may be that he won't have to worry about mowing the grass anymore, because he'll be under it. This is not an "I'll think about it tomorrow" kind of disease. Good luck. Amy

Ok Rebecca,

Here is hardball for him. Print this and tell him to read it!!

I am way to familiar with the "tough guy" thing and I am telling you both this story because it matters.

When my husband first noticed the lump in his neck he never said a word. He will tell you that he just thought it was a swollen gland and ignored it. Finally almost 2 months later he asked me to look at it. I felt it and then I told him to call the doctor immediately and make an appointment. I told him to ask if they could fit him in.

He called... they said Monday and he said ok. I blew up.

Monday he goes to the doc and she scares him by basically telling him "Oh Crap"

I thought that would be enough but noooooooo

She sends him to a dime store ENT who does a test and tells him that it isn't cancer and he wants to cut the lumps out. My husband agrees, makes the surgical appointment and comes home to inform me.

Once again I threw a fit. What? No second opinion? Just take him at his word and let him cut you up?

I told him that I wanted him to get a second opinion down in the Medical Center. He refused.
I got angry. He still refused.

Finally I started drafting the divorce papers and I got his attention.

I made the appointment with the second doc. He went and the doc refered him to an awesome ENT.

2 days later the diagnosis came. CANCER.

I was relieved and scared because had I not pushed he might be gone now. Had this doc cut him open he might have caused the cancer to spread.

But his hard head did not stop here. No there were more battles.

The battle to get him to txs. First there was the single tooth that had to be pulled. He was against it. Tried to findevery avenue out of it and the clock was ticking. Couldn't start the txs until the tooth was gone.

I made the appointments... I made him go... he was not happy with me because I was the bad guy.

Finally out with the tooth and in with the port.

Still he was not going to do the txs. He heard stories, listened to the docs and at some point told me that he was just going to let the cancer kill him.

Once again my fire flared. I will be damned if I am going to just sit here and watch you die.

In the car and off to the hospital for the first tx.

Still he would not give.

txs were hard and when he stopped eating he refused the PEG. Once again a bloody battle and I got my way. PEG inserted.

5 rad txs left and he wants to quit. He tells the techs no more. Here I go again. Drag him down the hall, walk him into the room, get him on the table. Push and push. Can't quit now because we are too close to the end.

By the time he finished his txs he was in bad shape. Couldn't get out of bed, go to the bathroom, stand or even sit. His ears were clogged so he couldn't hear, his skin was burned, and he was 50 pounds lighter.

One month after txs..... back on his feet and back to work. Feeding himself through his tube and recovering.

2 months after txs... tube removed. Eating not easy but he did it.

Each month brought new improvements. More weight, easier eating, back to working normally.

Now we are only a couple of months before his 2 year anniversary. And now if you talk to this hard headed man he will say this to you as he has to everyone he knows.....

"If it weren't for my wife I would not be here now. She saved me life to spite me and I am grateful!"

It is almost everyday that he tells me I saved his life. I don't look at it that way because the truth is that he saved his own life by doing the things that needed to be done. I was just the reminder that this and that must be done and the cheerleader who refused to give up even when he was fighting with himself.

The sooner you tackle this disease the greater your odds of survival. It is just that simple. The more time you spend thinking of excuses and reasons not to..... the more time this disease has to grow.

This is your battle. No one else's battle will be the same so don't lose a moment of time taking care of what you know you need to do.

Take your stubournness and channel against the cancer... not the txs.

It is a difficult journey but then no one promised you that anything in life was going to be easy. So get up, drive on to the hospital, here or in Dallas, get started.

It isn't going to just disappear but you might and ask yourself.... isn't your life worth the fight?

Rebecca, I hope that this will help a little. I know it seems harsh and it is because the reality is harsh. But the results are worth every bit. Let him know that!!!

All the best to you both!

If you need any help don here in Houston just ask. Where there is a will a path can always be found.

With Love,
Cindy

Cindy/ Amy: Thanks so much for the additional input. I have started playing hardball. I'm no longer asking whether he's done something, or asking first before I do it, I'm just doing it and telling him about it afterwards. Won't go into details but as of this morning it looks like his MDAnderson caseworker is requesting his evaluations begin next week. Of course I wish it were today but, considering we weren't even close at the beginning of the week, next week isn't that far away.

Thanks Bryan Hill, who suggested I post here, as well as to everyone else who's responded & helped to empower me. Thanks also to the American Cancer Society for recommending I contact the Patient Advocate Foundation (who I'm still working w/to move things along).

I'm sure you'll see more of my posts as things progress. I know there's a long battle ahead.
Thanks again,
Rebecca