Husband Had Some Major Set-backs From Pelvis Radiation

[Believe51]

Radiation went better for the whole brain than the pelvis, he had several major problems!! Whahhh!! I have remained in the house since Friday, August 3rd. I took 2 days out of work to remain near to him, in fact it is the only time since dx that I had to stay home because of his illness (usually I just leave early).

He was experiencing severe stomach pain and the Radiologist could not have mapped him out better, she blocked out organs and took great pride in the entire process. Hubby was in pain for about a week and each day he thought it was a little better, he would take two steps backwards!! Finally, he had a gas-type bubble that ruptured (dislike that word, but that it what they called it) and he about nearly passed out. His doctor prescribed Bentyl (spelling??) and although it made his stomach very nervous, the spasms stopped. We are unsure why this happened, we only know that he has not complained at all since this journey, for him to even complain was a shocker. Monday he told me that he did not think he was going to make it the weekend. Can not even tell you all how afraid that made me feel.

The medicine has done it's magic and he is spasm/pain-free, but he has lost all the weight he struggled so hard to put on before this next chemo recipe. In one week I watched in horror and really felt more helpless than normal. Well we made it the weekend, we survived the week, now it is a matter of gaining some weight back for chemo. Yes My Warriors, finally he will be starting the Tykerb/Xeloda on Monday, August 13 and thirteen is our very lucky number. We have learned so much about these drugs thanks to you, but I am asking you again....Anything you want to add to aid us in our next realm of this journey?? Any pointers you could suggest to help make this path a journey to remember?? (like we would forget any of this!!!)

And we will have no medical coverage starting on September 1, if I do not generate more than $4,000.00 in bills. Seems like a waste to me, we saved them 4 grand, he will never work again, he is totally disabled!! I told him he would have to trip me down the stairs so I would have to go to the emergency room. He did not laugh!! (It was I whom was hysterical and could not breathe I was laughing so hard). Then I cried. How can they deny him the medicine he needs to conquer this battle?? Sounds like discrimination to me!! Uggh, I am sooooo mad right now!! I asked the nice man (not his fault) to let me sum up what he just said: "What are you saying to me? Are you telling me that the state will let my husband DIE?? That he will not be able to get the medication he needs to get better?? You are saying that there is no where else to go? I had the conversation with the grace I usually have, choked up with tears and apologies for not being able to speak and breathe normal. Although I try to keep both tears and anxiety to a bear minimum, I am besides myself with sadness. Right now I will be writing a letter to the Senator that represents Rhode Island, do not know where that will get me but I must try. Maybe we can get help, maybe we will be able to help others, all I know is I must fight all the battles that go with this. His job is solely to take the medicine and gain weight, nothing more.

This week played on my heart and soul, it filled me with negative thoughts, anxiety and yes girls major depression. I strive each day to become a better person for myself as well as others, but this week has made me feel like a stranger to myself. I know I do not usually sound this down or depressed, but I need to vent. I want to scream (and yes Chrissy, I will be taking a ride to do so!!! LOL), I want to run and run and run and run. I want this all to go away, I want certain family and friends to leave us alone, I want to see my husband better. I know some of those wants that are unrealistic, but I have my goals 'ya know!!

I am so sorry to have you hear me like this but there is no place I could be that will help me like talking to you, My Angels!! I am having a bad week is all, I know this too shall pass. When I come onto the board I AM HONEST, I never say anything to make someone feel good or to tell them something they need to hear. Whenever you read anything I have to say BELIEVE THIS: I am 100% real, I am genuine with my feelings and thoughts and have always enjoyed writing, sounds like a good combo to me!! LOL!! I do not wish for this to make anyone sad or to have them worry about me, just being 100 %!!! We will have a quiet evening at home tonight, maybe I can trip myself down the stairs if I try real hard!!

And one more thing: I Still Believe!!!

Love you all and any reply is most welcomed. Say a prayer for you if you say one for us!! LOL. Continued love and prayers, and oh yes....positive thoughts all coming your way!! Believe51

[mts]

Oh Believe !

What an ordeal this has become for the two of you... I really feel awful that the insurance takes no interest in his recovery. He's been through so much already.

Hang in there ! You are great support to him and I believe that your ability to find humor in the darkest places is a testimony of your strength.
Praying for you and of course, your dear, dear hubby.

Maria (MTS)

[chrisy]

Oh Marie,
I am crying and praying at the same time. And I don't even know what to say(pray), but I know that God hears the cry of his children.

I hope that being able to vent here has helped - there is absolutely nothing worse than that trapped, helpless feeling. We all love you and Ed, especially for being real and who you are. I'm not recommending this, but in the book "Inner Fire - your will to live", which is a collection of stories of WARRIORS, one long term BC survivor broke a window every day. Because she was very pissed off.

Do not lose heart - I know you won't - and know that we are wrapping our love around you and Ed.

This can turn around. The Ty/Xel may be just the ticket. And I know the money will work out.

Hang in, my dear.
Much love
Chris

[Joe]

Believe 51,

If your husband is not receiving Social Security Disability, have him apply as soon as possible. Stage IV metastatic breast cancer should be an automatic qualifier.


Regards
Joe

[Mary Jo]

Marie,

I wrap my arms around you and your husband and say a prayer that things will work themselves out. Such awful circumstances and your feelings and sadness are felt by all of us here. Things like this shouldn't even be able to happen here in the "good ole' U.S. of A"

I wish I could help in some way. The only way I can help is to pray and that I will do. With God All Things Are Possible. I BELIEVE that and KNOW you do as well.

God's Peace to you and Ed,

Mary Jo

[MichelleH]

Oh my gosh Marie, my heart has just sunk reading your post, I feel your pain, frustration & agony. By all means, as Joe has suggested, SS disability is what you two need to do and do quickly. As far as the drugs, the drug companies have some good programs that can possibly give you these drugs for free. This is how I get my Tykerb/Xeloda because I have insurance with no prescription coverage & can not afford to buy these drugs. Of course, there is some red tape, and a few hoops that you must jump through along the way but well worth it. It just pains me to hear you & Ed having to deal with the fear of no insurance among all the rest of your concerns with Ed and this crappy illness. Oh crap, now I am bawling. Keep the faith girl. I truly believe that Ed will start feeling better soon after starting Tykerb & Xeloda, as I have. All of us here love and support you and Ed. You are truly a warm, loving and caring person. Ed is truly blessed to have you as his caregiver.
You and Ed are always in my prayers.

Bless you both.

Love & big warm hugs,

Michelle

[Vanessa]

I am thinking of you and Ed and keep both of you in my prayers. I hope your week gets better.

[cafe1084]

You are such a rock of strength! I can feel that when I read your posts. You'll continue to do for your husband because of your love for him, BUT you do not have to put up with certain friends and family members if you don't want to. Whatever your reasons, life is too precious and fleeting to deal with those who are not on your side or are not a positive influence in your life. I'm hoping and praying for positive things for the both of you!

Steph C

[Lala]

Like Joe suggested please call social security immediately, Disability is given to those stage 4 retroactive to the date of diagnosis.
There is also The American Cancer Society 1800 ACS 2345 Call them and tell them you are calling on behalf of a stage 4 patient . There is Help they can put you in touch with organizations that will help pay bills and help advocate for you. There are programs for those seeking aid. I wish you the best, hang in there.

[tousled1]

Marie,

My heart goes out to you. I feel the pain in each and every word you write. You are a wonderful caregiver and Ed is certainly lucky to have you by his side. As for the family -- tell them when you don't want them there and they should respect your wishes.

Please apply for social security disability for Ed if you have not already done so. You can actually do it online and with having Stage IV cancer you will receive a quick, positive answer.

Take each day one at a time. Enjoy each other. Ed will have bad days as he's been through so much in such a short period of time. And now he will be starting chemo. I know in my heart that this chemo regime will be just the ticket Ed needs to become NED.

You and Ed are in my prayers every day. Don't loose your fighting spirit -- you need to hold on and hold on tight! Remember Miracles do happen.

[Sheila]

Marie
You are the woman of so much encouragement to all of us...I read your post with tears...keep the faith, this too shall pass....and their WILL be better days. You have conquered too much to let the insurance company rule you....where theres a will theres a way. First and foremost, contact the SSD, like Joe said...because that will also qualify Ed for Medicare...then contact the Drug companies for their compassionate program....they can help. Get some immodium for Ed, as many get diarrhea from the Tykerb. Also, have you tried Ensure to try to help Ed gain some weight?
Marie, with you as Ed's manager...this cancer doesn't stand a chance...you are a warrior. Your strength is enveloping! He is so lucky to have you by his side.
You are both in my prayers constantly....don't throw yourself down the stairs for the insurance company, Ed needs you!
You both DESERVE a miracle!

[LAURIE]

I don't know what to write but I am so glad you have this outlet to be real. It helps a lot to let out frustrations. I too Still Believe!!! I believe in you and your husband.

[kareneg]

Dear Marie,

I am so sorry what a week you and Ed had. Please know your in my thoughts and prayers and I am sending you a big big hug my friend!

[StillHere]

Oh Marie, I got so worked up reading your post that I went into a severe HOT FLASH. I was just positively dripping MAD. I was so frustrated with your news. Thank goodness for all the responses you received concerning insurance. I will hold nothing but positive thoughts for you and Ed. Please feel free to vent anytime you need. Peace, Karen

[Believe51]

This is the third time I have tried to post and I have lost these posts so if I travel around during this one, try to remember I do not know where I left off & that I am a little crazy to begin with!! I left work early Friday to get some things done towards fixing these issues for my husband's medical. Here is my story and I am sticking to it!!:

He does have the equivilant af Rhode Island State Medical (Medicaid) and cannot get the Medicare that you have spoke of until he is diabled two years (9/7/07 is one year). We are considered to have an excess in our monies recieved catagory...HaHaHa..right!!! You really have to be living under a bridge to get help!! His food alone costs about $75-$100 per week!! I will call my doctor soon to tell him to go ahead with the testing for me, I lost coverage when he could not work due to illness. Any bills used to meet the criteria will remain unpaid so it is wise for me to use my bills since the hospital I worked at has me on 'charity care'. They do deduct a percentage and I am on a payment plan for the rest, the little things girls. And do you know if you get a lawyer here in the state of Rhode Island to help you get your disability, the state removes the same amount each month from his check?? Well, Rhode Island is not known for their innocent reputation!!

The important thing here that needs to be done immediately is getting his second script for Tykerb/Xeloda before September 1st, then meeeting that criteria. I have a call into the State Senator and the Dept of Elderly Affairs, he is not condsidered elderly but his needs are large. If qualified he will have someone coming into the home each week to help him with the common things and I welcome it. A good caregiver is able to delegate responsibilities, duties and care..(Do I not sound so professional?? ROTHF). In all seriousness, it will allow me to go to work and stay there while he is getting some care on and off through the week. I have also let my Mother-in-Law explore avenues I knew were dead ends, like the Medicare thing. She needed to find out for herself because she was not understanding what I was saying about my past explorations. She cannot understand that the state would leave him without coverage. Guess again my sweet Mommy. We cannot get free scripts from independant firms because they go on a sliding scale, not qualified, but I will try again. It is like you need to find that bridge (and no I will not jump!! LOL)

Ed is still not feeling 100% with his stomach and he will try to start chemo this week. It is very important that he start soon, but with his stomach still aching he is sabotaging his recovery and potentially setting himself back some if he starts when his body is not ready. We have the chemo divided up in medicine dividers and are so good to go. When you are ready my Love, we will all be here helping you by.

As for the family and friends who are causing stress, see 'ya! I am finished trying to understand people with a sick husband at home that they do not try to understand. Especially my grandmother, now just my landlord, LOL!! I have started a poem to ease some of the pain that has encompassed my life, I always knew she felt for me but I was in denial about the lack of love and concern...goes like this: 'I used to have a grandmother, she used to show me love>>But now I am just a tenant, who lives upstairs above!! ROTHL!! I know this talk does not come out of my mouth, but years of pain, years and the poem makes me feel lighter.

And now for you:
Chrissy: Please stop crying, you should be making chocolate martini's for Sheila and the rest of us. As soon as I am finished I will be going to Borders or Barnes & Noble for the book. I won't drive, don't worry...LOL

MTS: Thanks for reminding me of the strength I find even through those darkest of days, sometimes I need to be reminded. Keep those prayers coming, they are well needed.

Marejo: You wanted to be able to help someway...well you did and you always do. The prayers and kind words, the knowledge and honesty...it is everything we need!!

MichelleH: Do not sink too low and dry your eyes too. Chrissy needs help making those martini's. Thanks for the drug advice, I will try the individual drug companies and independent plans again, forget being assertive, I will now be aggressive!!

Vanessa: My week is getting better, having support from you wonderful warrriors always keeps me in line. I am so empowered by the love we gather here!!

Cafe1084: Hope you liked the poem even though it is not finished yet, it allows me to remember that life is fleeting and I have no room or tolerance for the likes of selfishness, negativity and greed.

Lala: Thanks for the continued support, your advice is taken with us to the doctors and I explore all avenues of what you inform us with.

Tousled1: I will hold on tight, I will still Believe. And YES My Love, we are inviting you to meet us at NED. Is it a date??

Hey Ma: We are going to have to either wait for the SCREAM RIDE or drink our martini's after we go. What ya wanna do??

Sheila: I promise I will not fall down the stairs, well maybe I cannot promise. Those chocolate matini's may do the trick for me!! LOL!! And it is an honor that you consider me to be a warrior, I feel so helpless.

Laurie: Thank you My Sweet for still Believing in us. Your post made me cry, it also reminded me why I am fighting and this too shall pass. Thank you for your warm heart and prayers.

Kareneg: Sorry you were in the hospital this week, I missed your posts. Thanks for the hugs and prayers.

StillHere: Hurry and grab a cold compress, we are meeting the girls for chocolate martini's. Keep those positive thoughts for us, we need them.

And Lastly Joe: How forever indebted we are to you!!!

A reminder: I Still Believe...>>Believe51

[Believe51]

Just wanted to pull this post forward to keep you all updated. Again Friends, thanks for the love and support. Keep Believing>>Believe51

[Mary Anne in TX]

Hey Believe!
I'm thinking that we need to bring Ed and a bunch of others on our ride (drinks included in the price) and make an adventure of it! We may start with a scream, but I'll just bet that the power in that car, train, bus, whatever...will soon turn to song!
I'm believing with you for your miracle...and immediately for some relief!
Lots of hugs and love,
ma

[tousled1]

Marie,

Please, if you haven't done so already, fill out the application for Social Security Disability. With Stage IV cancer Ed should be automatically approved. You must get the paperwork in so that he will qualify for Medicare at the 2 year mark and also so that he will have some income. I'm so sorry that you are having such problems. Have you contacted the drug companies directly and spoken to anyone about some type of patient assistance programs to help defray the cost of the drugs. You and Ed are in my daily prayers. Praying for a miracle!

[Andrea Barnett Budin]

Marie, my sweet! My daughter is visiting for 3 wks w/1 and 3 yr old boys and I have been preoccupied needless to say. Found a moment to check in to the board, which I literally crave when apart for a day or more, and saw your post. Dear God! Enough. Please. Poor Ed. He's had so much to deal with. Let him be. Let him get himself tgether for the next bout. Marie, did you say the spasms have stopped? Yes? Or are there ongoing stomach issues? I developed IBS w/Taxotere and was left w/it long after (actually till present). I have learned about various fixatives I will readily share if need be. Just let me know on that score.

I feel very good vibes re the next protocol! It's going to be THE ticket. You, and Ed, deserve a break. #13 is also my LUCKY number! Plus my (now 8 yr old) grandson was born on Aug. 13, so this is going to be the start of a grand new strata for you to be sure. That's a sign from the Universe! BELIEVE that! I do. You just have to keep on BREATHING and praying, Marie. Ventilating is excellent. I sure did my share when Paul had Shingles and all the horrifying complications that came with it -- is he having a stroke, is he in renal failure, am I about to become a widow ????? -- I was so scattered and unable to focus, I immediately decided I hated being the caregiver more than I hated being the patient. Yet, I struggled to hold on, so I could CAREGIVE and OVERSEE the docs and the nurses and the hospital and you know... So I understand your craziness, and I also know how strong and full of faith you are and that is going to get you through this, with the help and prayers of all of us putting our heads together and sending our loving energy straight to RI!

Your determination and assertiveness will get you and Ed where you need to be. A genuinely emotional and shaky voice does garner attention, I have learned. I just let it out, for all to hear, and they do hear. And respond. So keep doing what you do. Be YOU! Marie, you're one of the bravest Warriors I have ever met. Who wouldn't want YOU in their corner?!

I literally ache for you, for your sadness. I can feel it. And you're entitled to it, along with your anger (at family, at the state, at the insurance company, etc.)!!!! But the whole world is not against you, I promise you that. It just feels that way for now. So vent away. That's what we're here for. And we all know you, and your wonderful honesty, which comes through every time, with each post. You're the real deal for sure!

Don't ya just hate when you are plagued with negative thoughts? When you're a generally upbeat, positive individual and things just get to your heart and soul so that you can't help but respond w/lousy negativity? It's a mini defeat in and of itself. But, remember Marie -- you're human. You're not perfect. And that's perfectly okay. You're obviously doing the very best you can. And each day, your best is going to be different. Just know that and accept it. And give it your all. Between the tears and the rage and outrage and the need to sob and the instinct to quell it.

I hear you when you say -- Ed's job is to take the medicine and gain the weight. I knew when I was midst the hard chemo (vs Herceptin/easy chemo) my job was to HEAL and Paul took care of everything else. He knew I just didn't have the strength to brush my teeth without sitting. He was glad to *do something*, as he felt so helpless facing my ca. Unfortunately, you Marie are *doing everything*, and I hope it makes you realize how important a part of Ed's wellness you are and gives you that sense of control and gratification we yearn for, to feel *on purpose*. And that in turn gives you strength! Your love for Ed gives you courage and feisty attitude. And your BELIEF blesses your life and Ed's. Keep that in mind.

It's okay to feel depressed in the midst of this major crisis. You're entitled. Maybe you need some medicinal help. And that's okay too. Don't neglect your needs, Marie. You need to be sane to do what you must do, after all.

Keep your goals. Run, run, run if you think that'll help in venting. Just don't run away from home. Scream. Scream on this board all you want. Scream out loud, away from crowds if possible. You don't want to scare anyway. You are such a good person, and like such people, you keep on striving to be better with each day. That's who you are, and that's one reason I love you! Another is -- your honesty. What a precious quality that is! Duly noted and cherished by us all. And deeply admired. Wish more people could be brave enough to just say what they're feeling without worrying about how others will react. It's kind of you not to want to make us sad or worried but we hear your cries for help and we love you and so, naturally, we're going to pray for happier days for you and Ed, more health in your lives and some resolution w/the


The coverage thing will work itself out. Yes, you will have to knock yourself out to find and get it, but you will do it. So sorry that in addition to everything else you have to be further tortured by *the system*. But it is going to fine. Ed is going to get his medicine. YOU'RE ON THE CASE! With some great advice from Joe and all these fabulous ladies.

You write beautifully, because you express your true self and that comes through. Promise you'll stay clear of stairs, Marie. And, I know you still BELIEVE, even in the throes of anger and depression. Tomorrow will be better. One day at a time. And if need be, one hour at a time. Just stay in THE NOW. Don't look too far ahead. Except for getting your ducks in a row with getting the $$$$ you WILL get. You and Ed are in my thoughts, etched in grooves. You have my prayers for it all to calm down and get on track, on the road to wellness, joy and harmony. Much love, big hugs... ANDI http://cdn-cf.aol.com/se/smi/0201e05fca/09 Strength and courage being sent your way...

[VaMoonRise]

How I can understand your deep frustration and moments of anger. We were denied authorization from our insurance company twice for Xeloda and only had one appeal left. We were terrified of the thought of being denied again because we didn't know how we were going to be able to afford it. Well, the drug company that makes Xeloda is Roche and they were willing to give us the Xeloda until the insurance company made their decision and they sounded as though they would continue to provide it if the insurance company did deny us. Luckily the insurance company did come through for us at the last minute. While they were denying us we were paying for the Xeloda out of pocket, we are seeking reimbursement now.

Here is there information so that you may call them and hopefully get the same offer of assistance that we did. We are in a higher income bracket too because of my husbands ability to work and we don't have a lot of income going out.

Roche Oncoline Program
PO Box 18647
Louisville, KY 40261

Sharon Morrison
Oncoline PAP Customer Service
PO Box 18647
Louisville, KY 40261

Their phone number is: Roche Patient Assistance Program 1-888-587-9438

They will send you or fax to your doctor which is quicker the form that you need to fill out and one for your physician to fill out. They require that you provide your most recent income tax documentation and that your physician include a prescription for up to three months of Xeloda. If you qualify for enrollment in the program, they will contact your physician every 3 months to request new prescription information.

Also for the Tykerb the pharmaceutical company that makes it is Glaxo Smith Kline.

Here are two links that may be of help to you: This first one is all about Patient Assistance Program Frequently Asked Questions http://www.ashp.org/PAP/FAQs.cfm?cfid=22858359&CFToken=26705328

www.freemedicineprogram.com (http://www.freemedicineprogram.com)

You and Ed are always in my thoughts and prayers. I am sorry that I haven't been in touch lately, we too have been riding on an emotional roller coaster lately, one day good news the next day bad news, and back & forth like this for about a month. It is exhausting, frustrating, mentally, emotionally and physically taxing to say the least.

I couldn't help but to be thinking of you when I made my post today "Kicked in the Teeth Once Again," please be sure to take to heart what I said in the post and if you can go buy the two books that I mentioned because I know that they will do for you what they have done for me because we are both two strong believers who are COMMANDING the MIRACLE NOW! And I know that we both shall receive it, I am praying that you do as I pray for others and myself also.

I love you soooo much Sweetie and if I could wrap my arms around you right now I would. You contact me at any time and I will get back to you as soon as possible, I have more free time on my hands now so here I come, lol.

You try to stay strong Sweetie and don't be afraid to lean on others when you grow weary. We all here love you sooo very much, you bring such inspiration, hope, support, encouragement, love, caring, compassion, honesty and your beautiful spirit to and in each one of your posts that we all can't help but to be touched and our lives enriched so deeply by each and every one of them. Embrace that love and wrap yourself up in it like a warm hug and know that I am saying a prayer of protection for you and Ed, asking God and Christ to build a wall of armor around you both so that satan can not touch nor torment you both with his wicked lies and thoughts of confusion and doubt that he tries to plague our minds with. God and Christ will only allow feelings and thoughts of peace, calm, strength and tranquility into your spirit, soul, body and mind and the knowledge that They are with you both and loving you both, protecting you both, fulfilling all of your needs and answering all prayers that are lifted up for you and Ed in His Precious Name, Jesus Christ Our Saviour this I pray. Amen.

Love, Hugs & God Bless,
Nicola