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zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

My husband has EC T4 n1 this was in Jan 2009. Feb 2010 it has spread to his lungs . He is doing three rounds every three weeks of Carboplantin, They said 11 months, but he is not the average person (so a doctor said) cause he did not no smoke or drank. He is 57 years old. They say the best they can do is beat it down, hope it shrinks the tumors. I am at a loss for words, and not sure if I had the words I could spell them. He had his treatment in Ann Arbor Michigan, 130 miles away. We went to South West Mi cancer center but was not inpressed with the doctros there. So went back to Ann Arbor.Should we try to go to Anderson in Dallas Tx? From what I think I am understanding because they say no cure. That he has maybe a year. But I am so confused. And I don't know where to turn.When I try to ask questions I can not control the tears. Part of him is in deniel and the other part he is jsut given up. The closest support is 30 miles away. I am living a night mare and can only think what he is going threw So that adds to the saddiness I feel.. They say talk to some one , who my family run from the word cancer as if it was the something they can catch. We don't go to Church so have no support there . We don't get invited to things. So it is my him and I against the world. If that makes since. I am not educated in a way That I can express myself very well. I am so lonely and so scare. Sometimes I think If he died I should just go with him that I could never make it alone. Does anyone else feel this way? Have I just gone nuts?

Michaela25
Posts: 3
Joined: Jul 2010

Hi Zinniemay, Firstly you are not alone in your feelings. I am 38 and have never put a cigarette to my mouth ever and I have secondary cancer in the lungs. If anyone knew what I was thinking I think I would be put in the looney bin.

Do you have any cancer support groups in your area?

Please take heart in the knowledge that you are not alone and others are feeling the same feelings as you are. I think it might be harder for the families of the sufferers than the people that have the cancer. I know my parents feel helpless, they don't know what they can do to help me. You need to know that you are a strong person and very special. My heart and good wishes go out to you and your husband.

Kind regards Michaela

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Michaela,
My heart is breaking into a million pieces,I feel like there is something some how that I can do. I can not began to think how you feel. I want so much to help my husband to spare him pain. You don't know what your kind words mean to me.
I do not have a grasp on all the words and process that go on. I think I feel so dumb witted.
I have read a few of your post and though the strenght you have is unbelieveable .
I have no support group in this area we would have to go at least 30 miles one way. I don't go to Church,
Really I just don't go allot . If I do go my husband has always been with me. I do drive but not much unless he is sick.He is not crazy about my driving!
Anyway Bless your heart for listening to me . My name is Jennie , When I was growing up it was Ginny May (know them southerns have to put a middle name on a kid.
Greg and I have two adult children Elizabeth and Gregory .
Thank you so much

Jennie

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Michaela, I went back and read your post about stopping Chemo, I want to tell you I believ with all my heart there is a reason that you need to fight cancer, your writing mean so much to me. I can not tell you how happy just to have gotten a post from you.To know with all you are dealing with you still had time for me. It made my day and trust me there are few days to smile or laugh about. I know this to be true for people with cancer and their love ones. I believe you were a blessing to me. at a moment when I need someone, there you were. I could have missed you, tell me do you think it was a omen that we were meant to find each other? I think so. I can not offer much but a friendship. I can listen and be there went you need to vent. I am wanting to read about you and what you think about things. I just want you to know I am very happy you found me. You do give me hope.

kikiz
Posts: 94
Joined: Jun 2010

Hi Zinniemay,
You are not alone. If you can find a support group, that would be great. If you need to just vent, this seems like a great place to do that. The church I belong to does not require you to be a member just to talk to someone. You may just check into talking to any pastor or even Rabbi about attending some womens groups just for getting out and talking. I will look for more posts from you. Know that people do care and let me know how you are doing.
Kiki

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

KiKI,
I live in the country and the nearest town is two miles away , but the town is 700 people 200 dogs 400 cats , 7 churchs two gas stations two bars no grocery store.
I don't go to church. My doctor is getting a divorce so he has left(not very nice thing to do ). I think the loneliness is the hardest. Seams the word cancer is a nasty word , So people back away. We never have had many friends , we are not that good at making friends. I don't know why . We kind of stay to ourself.
There is support group but it is about 30 miles away I am not really sure what they do.
My daddy use to said "Jennie May your tongue starts wiggin thirty minutes before your brain knows what is going on". I talk so much when some one calls . Maybe cause I am lucky to get one call a week from someone! So I think darn, I don't even want to talk to me. Now I am afraid if I talk I will cry so now it is like what do I do? This will not help Greg.So where do I start? How can I make is easier on him? I need to get control of my feelings? It is him that is sick but my heart is being ripped out. That seams like I am making it all about me and I feel like I am selfish. I just want to keep him safe and I know I can't.

kikiz
Posts: 94
Joined: Jun 2010

Zinniemay,
Nothing wrong with tears and nothing wrong with talking. You are not selfish to need time for you. I have ovarian cancer but that does not mean the world revolves around me. My family needs outlets that don't have to do with my diagnosis. It will not help Greg if you hold it all in. Just being there for someone is more than a lot of people do. I have found that meeting new people when you have cancer can be tough. It can also be tough for the family members. What part of the country do you live in. I live in Topeka Kansas. You said you are not well educated but it seems to me that you express yourself well and sound like you just need a sounding board. Feel free to send me a message anytime. I get on the computer at least twice a day when I can beat my teenagers to it.(LOL) You and Greg will be in our prayers.

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

KiKi (love the name)
I live in Lawrence Michigan. I just can not get over all of you and your strengh , I don't know where or how to get it.
I was born in 1952 I had my left foot removed at age 12 months (about) by the time I was 2 I was walking with a prosthesis, I have what is called H.H.M.L. means one leg bigger than the other with many (100's) of tumors, only on the left side. I was told I would never have children I lost four and had two, I have had 36 operations. Twice in the last 11 years I was told after MRi 's I had cancer and sorry Charlie, a trip to the Mayo confirmed I did not have cancer the first time,that was three weeks of pure hell. So I do have a very small concept of the feeling, Then Three years ago I had another MRI that came back as cancer , a trip to Ann Arbor they said they did not think it was cancer but if it was there was nothing they could do. That is had spead into and around all my organs. So agin four weeks of uncertain feeling . So I decided that I would not have these test anymore .
But each time my husband stood by me held my hand all the way did not conplain he just did it for me. He just loved me. So now I want to find a way to understand the best treatment , where to go and all I can to help him. He is not one to take drugs, he refused all meds except the chemo. But this is making him weak and cramps. he will not take the meds they gave him. So I need to find someone to help walk me threw the steps we need to take to insure he has the very best care. He is going to Ann Arbor Michigan , he is taking carboplantin, they said the next round they will do a Ct scan to see if it shrinks the tumors. They said that we live to far away for trails but they would put him on the list.

So How do I know We are doing the best we can for him?
How brave I think you all are that even in sickness you are willing to reach out to others to help .
I don't say I will pray for you, because I don't pray very good I just say I will hold you in my thoughts.

Jennie
Lawrence
Michigan

kikiz
Posts: 94
Joined: Jun 2010

Have posted to your private email.
(By the way, kiki is short for MAKANAIKI my hawaiian name.

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hi JennieMay
I just love your name, and think it is cute that the "southerners" gave you two names in one! I was a caregiver for my dad. He passed away in March from esophageal cancer with mets to the liver. I still come to this site because I know that I can help people like you and your husband. I fought the battle with my dad for 16 months. I was the one making all the phone calls, dr appts, pharmacy calls, doing all of the research etc. Enough about me, now about you and Greg. I had to laugh when you wrote about the 700 people in your town being mostly cats and dogs!! Very funny. It is good to keep you sense of humor along this journey, you will need it. You yourself deserve a pat on the back for all of the obstacles you have conquered! You mentioned MD Anderson in Texas, I agree, they are a top notch hospital and cancer center. I always suggest getting a second opinion. We did and my dad lived 10 months longer than the first opinion told him he would! You keep doing what you are doing, you are on the right track. Always go with your gut feeling. Stay in touch and know that we will always be here for you.
Tina

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Tina,
My dad could not spell my real name is Vergia Mae he tryed to tell them Virginia May but it came out Verginie tell him death you could ask him my name and he would say Veginie May, now I never was called that I was called Virginia by teachers and so on, to my family it was Ginny Mae (still is) My husband and friends I am Jennie. I have always been a joke teller and laugh at things. That is why it is so hard. It to find the positive out of all this. I keep trying like his hair is falling out, I think well now I won't complain about the hair he leaves in the hair brush!
Right now we are doing Ann Arbor, they are very good so I hear, We went to a cancer center, they basically told my husband he had 6 months go on vacation and enjoy. So we went back to Ann Arbor. It is a teaching hospital and the Cancer center I can not complain about they are very kind. The problem I worry about is that it is 130 miles one way. Greg is handling the Chemo it is making him sick but for now (second round) he is still going and doing, not as fast as he use to but he is still doing things, like our garden, and little things around the home.
I don't have the spelling thing down and I struggle to spell words , I have always hard a hard time with grammer. Why ya'll aint spelling like us I don't know. (kidding)
I am glad there are people (not glad but maybe you know) have walked in my shoe are still on here. There are so many questions, so many!
Thank you so much for reading my post.

Cecile Louise's picture
Cecile Louise
Posts: 135
Joined: Dec 2009

I am very moved by your posts and I wish there were some magic words I could say to ease your burden. What I can tell you, though, is that we are all glad you're here (although not glad for the reason you're here). You now have a support group - a whole community of people who have similar stories who are happy to listen and help. This is a place where you can come to vent, rant, ask questions or just talk. These message boards are just chock-full of wonderful people who are now thinking of you and sending positive, warm thoughts your way. Please let us know how you are doing.

Sending love your way,
Cecile

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Cecile, Love you picture. We are taking the days as they come . I do have allot of medical problems but they really don't stop me , My husband was never sick a day in his life. So he always took care of me. Now it is my turn. Thank you for the warm thoughts and positive ones. They are great.
Thank you so much
Jennie

susan smiles
Posts: 12
Joined: Jul 2010

Dear Zinniemay, Hi, I'm so sorry for what you are going through. You are under a lot of stress! When they gave me my prognosis, they said I only had a year to live, that was 8 years ago. How do you and your husband feel about alternative medicine?
The most important thing for me, was to have and maintain a hope for the future.
Do you or your husband read the Bible? I needed to have important questions answered for me like "Why does God allow suffering?" and "What is the Hope for the Dead?" "Will we ever see real peace on the Earth?" How about you, have you ever asked any of these questions?
I think when you are facing death, it's really important to understand the condition of the dead. Jesus compared it to sleep, when you go to sleep you have no idea of at what point you lost consciousness, the same would be true of dying. John 11:11-46 gives a great account of how Jesus tried to teach this to his followers and how he had the power to bring a person back from the dead, and really wanted to. Revelation 21:4&5 says "And he will wipe out every tear from their eyes and death will be no more, neither will mourning nor outcry nor pain be any more, the former things have passed away." And the one seated on the throne said "Look! I am making all things new, write because these words are faithful and true."
I have some websites you might find helpful, if you are open to anything alternative.
I would love to hear from you and would like to help you any way that I can Sincerely Susan

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Susan, I have read the bible all of it twice, I went to far as to high ligh and underline parts that I did have questions about. I find it amazing that people have such faith. I would go so far as to say I envied them. I have not been so lucky to have the faith, I asked my husband about it he said he would rather air on the side of of god.
I beleive in something I am just not sure. I wonder like it has in the bible a women's hair is her crown and glory, So who passed a law that weoman can have short hair (Do you understand what I am trying to say) How can these be gods laws and we can change them? My husband would not eat meat on Friday's only fish. All a sudden we can eat meat on Friday? Seams to me the bible is man's law not gods. Answer to your question about suffering, I am not good at quoting the verses but it said there is a story about why not pick the weeds out and god said for fear he would also that the good. (Really such at trying to say what I mean). Have to look it up I have far to many questions because I lack faith!
I believe that I was born (deformed) because I was born me. They say when you die tou will be whole and prefect, but I think heck who are they kidding that would not be anything like me.Who who would it be?
ANd then I tell you I do have faith in man kind. I have faith in people that they will and do ,do the right thing. Sometimes it works and sometimes it don't. But that is life.

I guess I believe that if you sin you will know it is a sin in your heart, and I sould do the same thing and it not be a sin because it was not a sin in my heatr.
Now that I have made a mess and lost all my marbles I guess I should go check on my hu8sband he is napping so I peep in on him to make sure he is ok.

SueRelays
Posts: 489
Joined: Dec 2009

Hey Susan
Just reading the thread and sympathizing with all.....but I am curious as to what alternative therapies you tried. Always like to see what someone like you, surviving 8 years after the fact has done!!!!
CONGRATS!!!!

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