Help! My husband is only 38 and we have 2 very young kids.

cvandre
cvandre Member Posts: 8
edited March 2014 in Emotional Support #1
My husband of 10 years was diagnosed Sept 2008 with nasopharyngeal cancer. Our babies were just 2 years old and 6 months old at the time. The doctors said it had metastasized to his throat. He went 5 months of chemo/radiation, lost 40 lbs and all his hair. It was terrible for us but we were hopeful. The kids, especially the baby had to get to know their father again after treatment.

Only 5 months after chemo we find out it has also metastasized to the liver and the outlook is not good. We are now in stage 4 and the doctor says he's best guess is my husband has 5 years. I don't even know what that means! I'm so frustrated I just want to give up! I don't know how what to deal with first, my husband's grief, my own, talking to the kids, the finances. My husband is the sole provider in this household. Most of all I do not want to take these 2 babies to their father's funeral one day!

Cher

Comments

  • sue Siwek
    sue Siwek Member Posts: 279
    sweetie, my heart aches for
    sweetie, my heart aches for you. you must get help. call your primary care doctor, the hospital or clinic that is caring for your husbands needs and they will direct you to help. there are all kinds of support for families like yours. don't delay! don't be timid about this just ask and someone will help. please do not wait call tomorrow it is so important for you and the children no matter the outcome for your husband. it will make him rest easier knowing that you have taken this step and, may indeed extend his life just not having to worry about his family. please let this site know how everything is going. my thoughts are with you, there is hope. think of one day at a time but please! please! get support.
  • cvandre
    cvandre Member Posts: 8
    sue Siwek said:

    sweetie, my heart aches for
    sweetie, my heart aches for you. you must get help. call your primary care doctor, the hospital or clinic that is caring for your husbands needs and they will direct you to help. there are all kinds of support for families like yours. don't delay! don't be timid about this just ask and someone will help. please do not wait call tomorrow it is so important for you and the children no matter the outcome for your husband. it will make him rest easier knowing that you have taken this step and, may indeed extend his life just not having to worry about his family. please let this site know how everything is going. my thoughts are with you, there is hope. think of one day at a time but please! please! get support.

    thanks Sue
    Thank you for giving me some direction. My head is just spinning I can't even think straight. I just developed some kind of vertigo since this whole mess has started again only a week ago. The hospital taking care of my husband is huge, Stanford in Northern California to be exact. It's also about an hour away from home so I'll try my local hospital.
  • trish07
    trish07 Member Posts: 138
    cvandre said:

    thanks Sue
    Thank you for giving me some direction. My head is just spinning I can't even think straight. I just developed some kind of vertigo since this whole mess has started again only a week ago. The hospital taking care of my husband is huge, Stanford in Northern California to be exact. It's also about an hour away from home so I'll try my local hospital.

    Stanford
    My husband also is being treated at Stanford. I don't know what kind of local hospital you are near, but as I'm sure you know, Stanford is one of the best Cancer Centers in the nation. I would do all of my inquiries there. It takes us about an 1 and a half hours [with no traffic or accidents of course] we travel from Lodi,ca.
    Of course your local hospital may be better than ours.

    Hope you can resolve this soon, Trish
  • cvandre
    cvandre Member Posts: 8
    trish07 said:

    Stanford
    My husband also is being treated at Stanford. I don't know what kind of local hospital you are near, but as I'm sure you know, Stanford is one of the best Cancer Centers in the nation. I would do all of my inquiries there. It takes us about an 1 and a half hours [with no traffic or accidents of course] we travel from Lodi,ca.
    Of course your local hospital may be better than ours.

    Hope you can resolve this soon, Trish

    We've felt like we've been in good hands with Standford the last year. That's why it totally threw me for a loop when they told him he had 5 years. I feel like we've just started our battle and they're giving up on us.
  • sue Siwek
    sue Siwek Member Posts: 279
    cvandre said:

    thanks Sue
    Thank you for giving me some direction. My head is just spinning I can't even think straight. I just developed some kind of vertigo since this whole mess has started again only a week ago. The hospital taking care of my husband is huge, Stanford in Northern California to be exact. It's also about an hour away from home so I'll try my local hospital.

    stanford is the place! an
    stanford is the place! an hour drive is nothing. start there first they can advise your doctor locally the will work in concert with on another you just have to initiate.
  • sue Siwek
    sue Siwek Member Posts: 279
    cvandre said:

    We've felt like we've been in good hands with Standford the last year. That's why it totally threw me for a loop when they told him he had 5 years. I feel like we've just started our battle and they're giving up on us.

    i might add, they don't know
    i might add, they don't know that your husband has 5 years! my husband was told that there was nothing they could do 9+ years ago, we went somewhere else and he is still with us. get on with your life enjoy the good moments, this will create a loving memory for your children and who knows tomorrow some new treatment my appear.
  • cvandre
    cvandre Member Posts: 8
    sue Siwek said:

    i might add, they don't know
    i might add, they don't know that your husband has 5 years! my husband was told that there was nothing they could do 9+ years ago, we went somewhere else and he is still with us. get on with your life enjoy the good moments, this will create a loving memory for your children and who knows tomorrow some new treatment my appear.

    sounds so good
    I love hearing that. Thank you for the encouragement and good for your hubby! My husband is very determined to fight. He tells me he loves me and the kids too much to just give up. He has defied some odds. When he was in chemo he was told he had no choice but to have a feeding tube inserted because he was no longer able to eat. No matter how painful it was, my husband took Ensure 3x a day and never needed that feeding tube. He is amazing!
  • cvandre
    cvandre Member Posts: 8
    sue Siwek said:

    stanford is the place! an
    stanford is the place! an hour drive is nothing. start there first they can advise your doctor locally the will work in concert with on another you just have to initiate.

    we're still in Standford
    We will stay in Standford but I would like to ask about some experimental drugs to see what they say.
  • sue Siwek
    sue Siwek Member Posts: 279
    ask about clinical trials
    ask about clinical trials going on. usually there are many, my husband was in one for about 6 months and it shrunk his tumor but he couldn't take the side effects. it is well worth trying especially if your choices are limited. i am sure you can call stanford and be put in touch with the department that handles clinical trials. even if it doesn't work it is a selfless thing to do and could help others, we looked upon the choice of a clinical trial as his only chance and it did keep him going until another approved drug came along. this could extend his life long enough for that to happen for your husband as well. there is always hope that is what keeps us all going.
  • cvandre
    cvandre Member Posts: 8
    sue Siwek said:

    ask about clinical trials
    ask about clinical trials going on. usually there are many, my husband was in one for about 6 months and it shrunk his tumor but he couldn't take the side effects. it is well worth trying especially if your choices are limited. i am sure you can call stanford and be put in touch with the department that handles clinical trials. even if it doesn't work it is a selfless thing to do and could help others, we looked upon the choice of a clinical trial as his only chance and it did keep him going until another approved drug came along. this could extend his life long enough for that to happen for your husband as well. there is always hope that is what keeps us all going.

    will do
    I will definitely have my husband bring it up on his next appt. I believe they want to do more chemo before exploring other measures but we will ask. I'm not sure if that's the doctors choice or ours. Do we have to ask for it or do we wait for his doc to recommend it? Looks like there's a lot of hope out there with new drugs coming out. What has helped me thru this nightmare is doing the research. Somehow it makes me feel we still have some control.
  • sue Siwek
    sue Siwek Member Posts: 279
    cvandre said:

    will do
    I will definitely have my husband bring it up on his next appt. I believe they want to do more chemo before exploring other measures but we will ask. I'm not sure if that's the doctors choice or ours. Do we have to ask for it or do we wait for his doc to recommend it? Looks like there's a lot of hope out there with new drugs coming out. What has helped me thru this nightmare is doing the research. Somehow it makes me feel we still have some control.

    i have learned through the
    i have learned through the years to never wait for the doctors to bring it up, for that matter in all things in life being proactive is usually best. i would not wait until the next appointment call now, they will have a list of trials open to you. the controls are very tight so that the trial is kept true to the narrow definition of each trial. for instance my husbands trial required that a reoccurrence of the tumor had occurred before he was accepted in to the trial. if you don't know where to start try the oncologist office. good luck.
  • cvandre
    cvandre Member Posts: 8
    sue Siwek said:

    i have learned through the
    i have learned through the years to never wait for the doctors to bring it up, for that matter in all things in life being proactive is usually best. i would not wait until the next appointment call now, they will have a list of trials open to you. the controls are very tight so that the trial is kept true to the narrow definition of each trial. for instance my husbands trial required that a reoccurrence of the tumor had occurred before he was accepted in to the trial. if you don't know where to start try the oncologist office. good luck.

    I did not know that
    Then we will be proactive. We didn't know we could do that. I'm learning a lot of stuff from wonderful people like yourself here. I'm so glad I joined!
  • sue Siwek
    sue Siwek Member Posts: 279
    cvandre said:

    I did not know that
    Then we will be proactive. We didn't know we could do that. I'm learning a lot of stuff from wonderful people like yourself here. I'm so glad I joined!

    yipee!!!!keep this site
    yipee!!!!keep this site posted.
  • cvandre
    cvandre Member Posts: 8
    sue Siwek said:

    yipee!!!!keep this site
    yipee!!!!keep this site posted.

    thank you for your support!
    I'm still in shock now but I know when the news sets in I will get angry. That's when I'm most productive. Thank you for steering me in the right direction.
  • terato
    terato Member Posts: 375
    sue Siwek said:

    ask about clinical trials
    ask about clinical trials going on. usually there are many, my husband was in one for about 6 months and it shrunk his tumor but he couldn't take the side effects. it is well worth trying especially if your choices are limited. i am sure you can call stanford and be put in touch with the department that handles clinical trials. even if it doesn't work it is a selfless thing to do and could help others, we looked upon the choice of a clinical trial as his only chance and it did keep him going until another approved drug came along. this could extend his life long enough for that to happen for your husband as well. there is always hope that is what keeps us all going.

    I was in the clinical trials for Nexium!
    Great recommendation, Sue!

    In 1999, I had "level B" esophageal erosion with a personal cancer history and a cousin who died from esophageal cancer, so I entered Astra Zeneca's clinical trial, successfully concluding the 30 day protocol with a perfectly clear esophagus. Clinical trials can work wonders.

    Love and Courage!

    Rick
  • sue Siwek
    sue Siwek Member Posts: 279
    terato said:

    I was in the clinical trials for Nexium!
    Great recommendation, Sue!

    In 1999, I had "level B" esophageal erosion with a personal cancer history and a cousin who died from esophageal cancer, so I entered Astra Zeneca's clinical trial, successfully concluding the 30 day protocol with a perfectly clear esophagus. Clinical trials can work wonders.

    Love and Courage!

    Rick

    strange, my husbands name is
    strange, my husbands name is rick too.
  • sue Siwek
    sue Siwek Member Posts: 279
    terato said:

    I was in the clinical trials for Nexium!
    Great recommendation, Sue!

    In 1999, I had "level B" esophageal erosion with a personal cancer history and a cousin who died from esophageal cancer, so I entered Astra Zeneca's clinical trial, successfully concluding the 30 day protocol with a perfectly clear esophagus. Clinical trials can work wonders.

    Love and Courage!

    Rick

    hey rick! my husbands name
    hey rick! my husbands name is rick too!