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

You are quite welcome. And if you come here to Houston, let me know. I would be happy to lend any in person encouragement for you both!

All the Best!
Cindy

Rebecca, [I'll probably get flak for this] just want you to know- if you all go to Houston and should you be so inclined, Cindy makes a mean Margarita and is a good listener. Stay strong! Amy

Cindy/ Jam: MD Anderson called Monday & told us to be there Tuesday for evaluation (blood work, chest films, ct scan, surgical, radiology, speech path consults). Surgeon visually defined as stage IV. Radiologists were undecided as to T3 or T4 and also discussed N factor but I don't have my notes w/me right now. At this point, metastasis has not been discussed one way or the other.

The surgeon said she'd call today or Monday w/surgery date (and we'd assumed she'd let us know about metastasis then), but the primary coordinator called last night w/no metastasis news. Hoping the surgeon will still call but don't can't be sure and, if she doesn't, he's not going to hunt down the info (being of the mindset, "the doctors will tell me what they want me to know").

Surgery is currently scheduled for Nov.1. Doc admits it

Rebecca, well girl, hang on to your hat because this is going to be a rough ride. What they are proposing will not be a walk in the park. If you plan to be with him during this, you need to be prepared for a large amount of time dedicated to this. If you can't do it, he will need some "up close and personal" help after his surgery and later.Please ask whatever questions are spinning in your head now and we will try to answer them.
It's doable[I know because I've done it} but it isn't easy and if you are to be the caregiver, you will need some preparation. Keep talking-we want to help you. Amy

Amy - Didn't check the board over the weekend and am too nervous to post much today. Our MD Anderson surgeon was supposed to have called to schedule surgery today, but since coordinator already did that last week, assume surgeon will have called w/results of chest films & CT scan. It's late afternoon and I haven't heard from Chuck though. . . and I'm scared to call & ask what she said (or if she called even). Hope I'm just being paranoid but over the last 3 wks he's developed an increasing chronic little cough that doesn't sound good at all. Will keep in touch.
R--

Hang in there, Rebecca. Amy

Dear Cindy,

Your account of your husband's journey is one of the best posts I've ever read. I believe you did save your husband's life. I wish my Uncle had taken over the decisions for my Aunt's care long ago. Her life would be different now but instead, she allowed her depression, stubborness and fear to make foolish decisions for her. She's getting worse with every passing week. It won't be long until she can't get up from that bed that she spends 24 hrs. a day sleeping in.

You made the difference. An assertive spouse CAN make all the difference in the world! YOU are proof! Never diminish your role in this. I know how zonked I feel after speaking to my Uncle trying to give him support and a sense of direction. You lived it everyday. This is just as much your triumph as it is your husband's.

Husbands and wives- we're a package deal.

Rebecca,
I can't believe this -- I live in PODUNK, TEXAS, too, and we've NEVER MET!!! Actually I live in the Texas Panhandle and our commute to Houston was 8 hours, but worth every minute. If we had only gone as soon as my brother was diagnosed. Like your husband, my brother didn't tell any of us about his sore until 8 MONTHS after it first appeared! Then he went to the doctors in the nearest large city. Big mistake. We should have headed for Houston right off. Anyway, 8 months later (seems to be a pattern, there) he was undergoing the surgery you described above at MD Anderson. Unfortunately, for us, the cancer struck back with a vengance following the surgery and claimed him by June. BUT, what I'm writing to tell you about is the Texas Insurance Pool. It is through Blue Cross, Blue Sheild and they say NO ONE can be turned down. Of course, I have no idea what your rate would be, considering the diagnosis. We were fortunate that David had a wonderful insurance plan that covered so much of his expense. Of course, I think the docs in the first hospital took advantage of that and just wrote him off from the get go and decided to see how much money they could collect - don't even get me started.
Anyway, Southwest Airlines will also help with free round trip tickets for the cancer patient and one care giver. Seems like they provided trips 3 different times for David, then provided them at a reduced rate. Check with the American Cancer Society. They often offer free lodging, though you need to let them know ahead of time. Some churches also have free housing available near the hospitals. Talk to the caseworker MD Anderson assigned you. They can help find these resources. Other than that, don't worry. The main thing is to get your husband the best treatment you can and know you are doing all you can do. Of course, it does help when the patient helps out a little, but, as hard as David's diagnosis, radiation, surgery and inability to talk or eat was on us, I can't imagine how hard it was for him to deal. (He will always be my hero.)
As for the forum, I could never get my brother on here, either (He was a tough guy, too, a toolpusher in the oilfield). So, I would print out the information I received here on his behalf and all the wonderful wishes and words of encouragment and give them to him to read. He was a very quite and private person and it was hard enough to get him to express his feelings to us, let alone in a forum situation, no matter HOW wonderful I told him everyone was. You may have to be your fiance's strength right now. I know it is hard - I've been there - but we Texan gals can do it!
Love you,
Tonya