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